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| Preface | |
This directory is designed for use by families, as well as health and human service professionals who work with children and adults affected by known or suspected genetic diseases, birth defects, and related chronic conditions. When faced with new diagnosis or chronic illness, many families find valuable assistance from voluntary consumer-oriented disease organizations. They may choose to participate in a support group or to obtain educational and referral information. Now in its 5th edition, we have expanded this directory to include state and local agencies that offer services to families. As in the past, we have also tried to include all relevant support groups with a contact person or chapter in the state of Michigan. Please be sure to let us know about any we have missed. Associations with a regional contact person in a neighboring state are also list. Some listings represent well-established divisions of national organizations, whereas others are informal groups just getting started. Support parents who have expressed interest in networking are also included for certain conditions or regions of the state where no society exists. Since many groups rely on volunteers to answer their telephones, answering machines are often used. The caller should leave a message so that the call can be returned at a later time. All numbers listed have been verified as of the date of this publication. For those with Internet access, a list with relevant national Internet sites has been added. Fax numbers, e-mail addresses and website information for each group's listing are also included where available, either for the Michigan affiliate or its nation parent organization. Many support organizations, particularly those for rare disorders, have only a single national office and therefore will not be included in this booklet. Some organizations that can help you locate specific groups at the national level are listed in the section called NATIONAL CENTERS, NETWORKS AND ASSOCIATIONS. The Alliance of Genetic Support Groups publishes an excellent directory of national groups. This directory has been compiled as a service to Michigan families and the health care, education and social service communities. Listing of groups in the guide does not constitute an endorsement by the Michigan Department of Community Health. We hope you find the information useful and welcome your comments or suggestions for the next revision. | |
| Genetics Support Groups and Associations | |
| Acoustic Neuroma | |
| Acoustic Neuroma Association | |
| The mission of ANA is to inform, educate and provide national and local support networks for those affected by acoustic neuromas, and to be an essential resource for health care professionals who treat acoustic neuroma patients. | |
| 600 Peachtree Pkwy. Suite 108 Cumming, GA 30041 | |
| Phone: | 877-200-8211 |
| Fax: | 877-202-0239 |
| Email: | info@anausa.org |
| Website: | www.ANAUSA.org |
| All Disabilities | |
| ACCESS Education | |
| Proactive advocacy and consultation provided by special education experts to ensure that students obtain the educational services and supports to which they are entitled. | |
| 844 Barrett Lane Jackson, MI 49202 or Post Office Box 422 Plainwell, MI 49080 | |
| Phone: | 888-834-4340 |
| Fax: | |
| Email: | |
| Website: | www.accesseducationmi.com |
| Michigan Assistive Technology Loan Fund | |
| The Michigan Assistive Technology Loan Fund allows people with disabilities and seniors (or their family members) to purchase assistive technology devices or services, including vehicle adaptations and accessible home modifications. Loans may also cover cost of training to use the purchased equipment, warranties, and service agreements. | |
| c/o United Cerebral Palsy of Michigan 4970 Northwind Drive, Suite 102 East Lansing, MI 48823 | |
| Phone: | 517-203-1200 |
| Fax: | 517-203-1203 |
| Email: | info@michiganloanfunds.org |
| Website: | www.michiganloanfunds.org |
| Michigan TeleWork Loan Fund | |
| The Michigan TeleWork Loan Fund provides low-interest loans to people with disabilities to buy equipment to work from home. Individuals may work for employers or may have their own home-based business. Loans may be used to purchase equipment and supplies to run the equipment. | |
| c/o United Cerebral Palsy of Michigan 4970 Northwind Drive, Suite 102 East Lansing, MI 48823 | |
| Phone: | 517-203-1200 |
| Fax: | 517-203-1203 |
| Email: | info@michiganloanfunds.org |
| Website: | www.michiganloanfunds.org |
| West Michigan Inclusion Network | |
| Contact Stacey Diekevers at 616-889-3808 for more information. | |
| PO Box 7 Byron Center, MI 49315 | |
| Phone: | 616-889-3808 |
| Fax: | |
| Email: | info@wmin.org |
| Website: | www.wmin.org |
| Allergy | |
| Asthma and Allergy Foundation of America, Michigan Chapter | |
| The mission of AAFA, Michigan Chapter, is to improve the quality of life for individuals affected by asthma and allergic diseases and promote awareness of these diseases. | |
| 2075 Walnut Lake Road West Bloomfield, MI 48323 | |
| Phone: | 888-444-0333 |
| Fax: | 248-757-2102 |
| Email: | aafamich@sbcglobal.net |
| Website: | www.aafamich.org |
| Circle of Food Allergic Families | |
| We are a parent-run support group designed to assist families with children who have food allergies and eosinophilic gastrointestinal disorders. | |
| Oakland County, MI | |
| Phone: | |
| Fax: | |
| Email: | cofafmichigan@yahoo.com |
| Website: | www.cofafdetroit.weebly.com |
| Alopecia | |
| Alopecia World | |
| Alopecia World is a unique, exciting and positively life-changing social networking site for anyone living with chronic or medical hair loss. Our beloved community also welcomes family members, friends and other supporters. | |
| Detroit,MI. | |
| Phone: | |
| Fax: | |
| Email: | cheryl@alopeciaworld.com |
| Website: | www.alopeciaworld.com |
| National Alopecia Areata Foundation | |
| Support groups are available in Michigan. Contact the national chapter at 415.472.3780 for more information. | |
| 14 Mitchell Boulevard San Rafael, CA 94903 | |
| Phone: | 415-472-3780 |
| Fax: | 415-472-5343 |
| Email: | info@naaf.org |
| Website: | www.naaf.org |
| Alpha-1-Antitrypsin Deficiency | |
| West Michigan Alphas | |
| Support groups are held quarterly at various locations throughout Michigan. Families and individuals are welcome to attend. For more information contact Ken at 616-886-1486. | |
| 3611 Butternut Dr. Lot 217 Holland, MI 49424 | |
| Phone: | 616-886-1486 |
| Fax: | |
| Email: | |
| Website: | www.alpha1.org |
| Alzheimer's Disease | |
| A Friend's House Adult Day Services | |
| Support group meets on the fourth Wednesday of the month, from 1:00 to 3:00 PM. On-site respite services are available. Pre-registration and a small fee required. For information or to pre-register for respite services, call 586-759-8700. | |
| 26238 Ryan Warren, MI 48091 | |
| Phone: | 586-759-8700 |
| Fax: | 586-759-8789 |
| Email: | csmseniors@csmacomb.org |
| Website: | www.csmacomb.org |
| Alzheimer's Association - Greater Michigan Chapter - Northeastern Michigan Region | |
| We have at least one Support Group in each of the eleven counties covered by our region. | |
| 100 Woods Circle, Suite 300 Alpena, MI 49707 | |
| Phone: | 989-356-4087 |
| Fax: | 989-354-7879 |
| Email: | peggy.thomas@alz.org |
| Website: | www.alzgmc.org/index.htm |
| Alzheimer's Association - Greater Michigan Chapter - Northern Michigan Region | |
| Support Groups, telephone helpline, care consultation and care management, educational seminars and training, resource center, medic alert/safe return, respite assistance. 24/7 service by calling our toll free number 1-800-272-3900. | |
| 1040 Walnut Street Traverse City, MI 49686 | |
| Phone: | 231-929-3804 |
| Fax: | 231-929-2766 |
| Email: | jeri.braun@alz.org |
| Website: | alz.org/gmc |
| Alzheimer's Association Central Michigan Region | |
| support groups, autopsy referrals, telephone helpline, education and training, safe return, respite assistance. 24/7 assistance by calling our toll free number | |
| 4604 N. Saginaw Rd. Midland, MI 48640 | |
| Phone: | 800-272-3900 |
| Fax: | 989-839-5910 |
| Email: | |
| Website: | www.alz.org/gmc |
| Alzheimers Association Greater Michigan Chapter, Metro Detroit Region | |
| Family support groups, patient support groups, care consultation and care management, telephone helpline, medic alert/safe return, autopsy,adult day care centers, education and training.24/7 service by calling our toll free number 1-800-272-3900. | |
| 20300 Civic Center Drive Suite 100 Southfield, MI 48076 | |
| Phone: | 800-272-3900 |
| Fax: | 248-351-0417 |
| Email: | dian.wilkins@alz.org |
| Website: | www.alz.org/gmc |
| Alzheimer's Caregiver Family Circle For African Americans | |
| Support groups are held on the 2nd Thursday of the month from 6-8pm at the Brown Chapel AME Church in Ypsilanti. For more information contact Pastor Jerry Hatter at 1-734-482-7050. | |
| 1043 West Michigan Ave. Ypsilanti, MI | |
| Phone: | 734-482-7050 |
| Fax: | |
| Email: | |
| Website: | |
| Catholic Services of Macomb/A Friend's House Adult Day Services | |
| The Alzheimer's Support Group meets on the third Monday of every month, from 1:00 to 3:00 PM. On-site respite care is available at A Friend's House Adult Day Services. Pre-registration and fee required. To pre-register for respite services, call 586.412.8494. | |
| 15945 Canal Clinton Township MI 48038 | |
| Phone: | 586-412-8494 |
| Fax: | 586-412-8084 |
| Email: | csmseniors@csmacomb.org |
| Website: | www.csmacomb.org |
| Amyloidosis | |
| Amyloidosis Support Group | |
| ASG has quarterly face to face peer group support meetings at no charge with guest speakers, experts in the disease amyloidosis, 24 hour Toll Free Hot and Help Line 866-404-7539, helpful website with educational, medical and care giver resources and information about all 20 groups in the USA. Amyloidosis (pronounced am-i-loid'-osis) is an organ system disease caused by deposits of amyloid protein fibrils in one or more organs causing the organ to malfunction. The heart, kidneys, nervous system, and gastrointestinal tract are most often affected. There are three major systemic types, each caused by a different misfolded protein. All are very different. The most common is AL, A for amyloid, L for the light chain that is the abnormal part of an antibody made in the bone marrow in patients with this disease. A second type is AA, in which the amyloid protein comes from the serum amyloid A, a protein that is elevated in inflammatory disease. Hereditary forms comprise the last category and are characterized by deposits of a variety of misfolded proteins. Amyloidosis was first described in the 19th century, but only in recent years have significant advances been made. | |
| 232 Orchard Dr. Wood Dale, Illinois 60191 | |
| Phone: | 847-350-7540 |
| Fax: | |
| Email: | |
| Website: | |
| Amyotrophic Lateral Sclerosis (ALS) | |
| ALS Support Group at The University of Michigan | |
| Meetings are on hiatus for now. When they resume they will be located at the Taubman Center at the DeJong library from 6:30-8:30pm on Monday nights. Any questions or comments, please contact Jack Harrington jbharrin@med.umich.edu | |
| University of Michigan Department of Neurology | |
| Phone: | 734-936-6265 |
| Fax: | |
| Email: | |
| Website: | |
| Amyotrophic Lateral Sclerosis of Michigan, Inc. | |
| The mission of ALS of Michigan is to help people with ALS to live as fully as possible. Support groups for patients, families and friends in Ann Arbor, Jackson, Lansing, St. Clair, Southfield, Warren, and Waterford. Conferences and Seminars. Information and referral, Equipment loan closet, Speech Pathologist, Augmentative loan closet, Home Visits. Respite care program. | |
| 24359 Northwestern Hwy., Suite 100 Southfield, MI 48076 | |
| Phone: | 1-800-882-5764 |
| Fax: | 248-354-6440 |
| Email: | alsofmi@alsofmi.org |
| Website: | www.alsofmi.org |
| The ALS Assoc, West Michigan Chapter | |
| To lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support. | |
| 678 Front Street Ste 159 Grand Rapids, MI 49504 | |
| Phone: | 616-459-1900 |
| Fax: | 616-459-4522 |
| Email: | stacey@alsa-michigan.org |
| Website: | www.alsa-michigan.org |
| The ALS Association - Michigan Chapter | |
| 675 E. Big Beaver Road, Suite 207 Troy, MI 48083 | |
| Phone: | 248-680-6540 |
| Fax: | 248-680-6541 |
| Email: | kristen@alsa-michigan.org |
| Website: | www.alsa-michigan.org |
| Angelman Syndrome | |
| Angelman Syndrome Foundation | |
| Provides referral and resource information for Angelman syndrome; Local contacts in Michigan are available on the website. | |
| 4255 Westbrook Drive, Ste. 219 Aurora, IL 60504 | |
| Phone: | 1-800-432-6435 |
| Fax: | 630-978-7408 |
| Email: | info@angelman.org |
| Website: | www.angelman.org |
| Southeastern Chapter of Angelman Syndrome | |
| We provide parent support and education about Angelman Syndrome through networking opportunities such as informal gatherings, picnics, phone calls, newsletters and refer parents to supports and services for their child. We also provide core supports to parents such as behavior training, speech techniques and therapy techniques. | |
| 22366 Columbus Warren, Mi 48089 | |
| Phone: | (586) 778-5706 |
| Fax: | |
| Email: | our3angels2008@yahoo.com |
| Website: | www.geocities.com/candlecrazy_1999/girlswebpage.html |
| The ARC of Northwest Wayne County | |
| Provides information and support to families of children with developmental disabilities. Offers a toy loan program, encouragement, and information for parents and siblings on techniques for playful interaction with children who have special needs. | |
| 26049 Five Mile Rd. Redford, MI 48239 | |
| Phone: | 313-532-7915 |
| Fax: | 313-532-7488 |
| Email: | |
| Website: | |
| Arthritis | |
| Arthritis Foundation, Michigan Chapter | |
| Call for information on more than 25 groups in Michigan. | |
| 1050 Wilshire Dr. Suite 302 Troy, MI 48084 | |
| Phone: | 800-968-3030 |
| Fax: | 248-649-2895 |
| Email: | info.mi@arthritis.org |
| Website: | www.arthritis.org/chapters/michigan/ |
| Aspergers Syndrome | |
| Canton Aspergers Network | |
| We are a group of parents and grandparents of loved ones with Aspergers Syndrome. We meet once a month - the 3rd Wednesday of the month at Tonda Elementary School in Canton, MI. We offer support and share ideas and information with one another. | |
| 47316 Bartlett Dr. Canton, MI 48187 | |
| Phone: | (734) 416-1070 |
| Fax: | |
| Email: | amcooley@cantonaspergersnetwork.com |
| Website: | www.cantonaspergersnetwork.com |
| Attention Deficit Disorder | |
| Children and Adults with Attention Deficit/Hyperactivity Disorder | |
| National organization provides information and support on attention deficit/hyperactivity disorder. Contact for latest information on Michigan chapters in addition to those listed below. | |
| 8181 Professional Place, Ste 150 Landover, MD 20785 | |
| Phone: | 1-800-233-4050 |
| Fax: | 301-306-7090 |
| Email: | |
| Website: | www.chadd.org |
| Children and Adults with Attention Deficit/Hyperactivity Disorder of Eastern Oakland County | |
| CHADD is a non-profit support and advocacy organization formed to better the lives of individuals with attention deficit disorders and those who care for them. Meetings will generally be held on the first Monday of the month from 7:30-9:00pm at Way Elementary School on West Long Lake Road, just east of Telegraph, in Bloomfield Hills. There will be 2 meetings, as listed below, at the same time in separate rooms: 1. Parent Support Group-for parents of children and teens with AD/HD 2. Adult AD/HD Support Group-for adults with AD/HD. All meetings are free to CHADD members, $5 donation for non-members. | |
| P.O. Box 1071 Birmingham, MI 48012 | |
| Phone: | 248-988-6716 |
| Fax: | |
| Email: | EOCChadd@aol.com |
| Website: | www.chadd.net/527 |
| Children and Adults with Attention Deficit/Hyperactivity Disorder of Eastern Wayne and Macomb Counties | |
| Sponsors monthly support groups and informational meetings October through May. Meetings held 2nd Tuesday of month, located at: Macomb Intermediate School District Building 44001 Garfield in Clinto Twp. | |
| P.O. Box 806086 St. Clair Shores, MI 48081 | |
| Phone: | 586-447-2845 |
| Fax: | |
| Email: | |
| Website: | www.help4adhd.com |
| Children and Adults with Attention Deficit/Hyperactivity Disorder of Grand Rapids | |
| Support/Information groups with topics and speakers are available for parents/caregivers and adults with AD/HD and those who care about them. Parent support groups are held on 3rd Tuesday of the month at St. Luke's Lutheran Church on the corner of 4 Mile Rd. and the East Beltline, at 3215 4 Mile, from 7-9pm. The Adult support group meets on the 1st Tuesdays of the month from 7-9pm at Calvin College in the Meeter Center Lecture Hall off of the library lobby. These support groups are free and open to all interested. Membership to CHADD National is encouraged but not required to attend. Starting on Thursdays, April 1st, a parenting class for parents raising children with AD/HD will begin at the Kent Education Center-Mayfield Middle School, near Michigan and Fuller, from 6:30- 9 pm. We will not meet the second week, on April 8th, due to spring vacation. There is a $145 charge for non-members and $100 for members, which includes all materials, including a comprehensive study guide and access to a lending library. Topics covered will include AD/HD misunderstandings, parenting strategies, avoiding power struggles, and how to help your child succeed in school. For more information call Linda at: 616-874-5662. | |
| 7269 De Costa NE, Rockford, MI 49341 | |
| Phone: | 616-874-5662 |
| Fax: | 616-874-5662 |
| Email: | lindakbrauer@gmail.com |
| Website: | www.chadd.org, chaddgr.com |
| Autism | |
| Autism Society of Michigan | |
| The purpose of the this organization is to support persons with autism, their families and the professionals who support them through our newsletter, workshops and conferences. Our website offers critical updates in information regarding autism spectrum disorders and statewide issues affecting families and providers. Staff can assist families and professionals search for resources and verifly school and community supporters. ASM's mission is to support persons with autism so that they may become contributing members of their school and community. | |
| Autism Society of Michigan 1213 Center Street, Suite B Lansing, MI 48906 | |
| Phone: | 1-800-223-6722 |
| Fax: | 517-882-2816 |
| Email: | autism@autism-mi.org |
| Website: | www.autism-mi.org |
| Autism Support of Kent County | |
| Autism Support of Kent County, Inc. (ASK) is a non-profit 501 (c)(3) organization of parents, school staff, and others who actively seek to support and advocate for persons with Autism Spectrum Disorder (ASD) and their families. | |
| P. O. Box 150348 Grand Rapids, MI 49515 | |
| Phone: | 616-752-8577 |
| Fax: | 810-222-4892 |
| Email: | askkentcty@aol.com |
| Website: | www.autismsupportofkentcounty.org |
| Center for Autism Spectrum Disorders | |
| The Center for ASD is a treatment facility targeted towards helping individuals with autism. We offer speech-language therapy, occupational therapy, music therapy, nutritional therapy, social skills training, and parent support groups. All services are provided by professionals specializing in children on the autism specturm. We are open M-F from 9-6. | |
| 640 North Old Woodward, Suite 203 Birmingham, MI. 48009 | |
| Phone: | (248) 723-4ASD (4273) |
| Fax: | (248) 723-4274 |
| Email: | srosin@centerforasd.com |
| Website: | www.centerforasd.com |
| Everyday Miracles | |
| Everyday Miracles is a parent-led, community based support network assisting families with children on the autism spectrum through grants. | |
| P.O. Box 182278 Shelby Township, MI 48318 | |
| Phone: | 586-283-3025 |
| Fax: | |
| Email: | contactus@autismcanend.org |
| Website: | www.everydaymiracles.org |
| Judson Center Autism Connections | |
| Judson Center Autism Connections offers a wide range of educational, therapeutic and support services designed to assist individuals with autism, their families and their communities. Therapies and skills training promote independence and maximize potential for children and adolescents with autism spectrum disorders. Parents of newly diagnosed children often don't know where to turn. Judson Center's Autism Connections program gives parents the resources, education, awareness and support necessary to regain hope for their child's future. | |
| 4410 W. 13 Mile Road Royal Oak, MI 48073 | |
| Phone: | 248-837-2047 |
| Fax: | |
| Email: | autism_connections@judsoncenter.org |
| Website: | www.judsoncenter.org |
| Macomb/St. Clair County Chapter of the Autism Society of America | |
| We are a support group for families with autistic children. We conduct two meetings per month from September through June. One in St. Clair county and the other in Macomb. For meeting times and places please visit our website | |
| P.O. Box 182186 Shelby Township, MI 48318 | |
| Phone: | 586-447-2235 |
| Fax: | |
| Email: | |
| Website: | www.macombasa.org |
| Oakland University Center of Autism Research Education and Support | |
| Support group open to parents/caregivers of individuals with an Autism Spectrum Disorder. Call for more information. Recreational programs offered for children, see website for more details. | |
| School of Education and Human Services 420B Pawley Hall Rochester, MI 48309 | |
| Phone: | 248-370-2424 |
| Fax: | 248-370-4242 |
| Email: | oucares@oakland.edu |
| Website: | www.oakland.edu/oucares |
| Autoimmune Disorders | |
| American Autoimmune Related Diseases Association | |
| AARDA has information on more than 100 autoimmune diseases such as lupus, alopecia areata, rheumatoid arthritis, agammaglobulinemia, vitiligo and many others. Educational pamphlets and newsletters are available for patients and the medical community. Call 1-800-598-4668 for a free packet about autoimmunity. You can ask for disease-specific information. | |
| 22100 Gratiot Ave. Eastpointe, MI 48021-2227 | |
| Phone: | 586-776-3900 |
| Fax: | 586-776-3903 |
| Email: | aarda@aarda.org |
| Website: | www.aarda.org |
| Batten's Disease | |
| Batten's Disease Support and Research Association, Michigan Chapter | |
| An international support and research networking organization for families of children and young adults with this inherited neurological degenerative disorder. | |
| c/o Linda Houghtby 16022 Blue Skies Dr. Livonia, Mi 48154 | |
| Phone: | 734-591-3062 |
| Fax: | |
| Email: | dhoughtb@hotmail.com |
| Website: | www.bdsra.org |
| Bipolar Disorder | |
| Depression and Biploar Support Alliance of Kalamazoo | |
| Meetings are held every Monday at Chapel Hill United Methodist Church at the corner of Oakland Dr. and Romence Rd. We meet from 7 to 9 p.m. | |
| C/O Chapel Hill United Methodist Church 7028 Oakland Dr. Portage, MI 49002 | |
| Phone: | 269-599-2782 |
| Fax: | |
| Email: | dbsa_kazoo_mailer@yahoo.com |
| Website: | www.freewebs.com/dbsa_kazoo |
| Depression and Bipolar Alliance of Southwest Michigan | |
| Our Suppoart Group meets every Monday of each month from 6:00 - 8:00 pm in the Community Room, Lakeland Regional Medical Center, 1234 Napier Avenue St. Joseph, MI | |
| 6156 Demorrow RD Stevensville, MI 49127 | |
| Phone: | 269-369-9154 |
| Fax: | |
| Email: | skifri@gmail.com |
| Website: | frierj@cvn75.navy.mil |
| Depression and Bipolar Support Alliance of Jackson and Hillsdale | |
| Support group information can be found on the website. For more information call 517-780-3332 or 1-866-630-3690. | |
| 1200 N. West Ave. Jackson, Mi 49202 | |
| Phone: | 517-780-3332 |
| Fax: | |
| Email: | |
| Website: | www.lifewaysmco.com |
| Depression and Bipolar Support Alliance of SE Grand Rapids | |
| We meet at Genesis United Methodist Church every 2nd and 4th Sunday of the month from 2-4 pm. Our group seeks to provide a very supportive and affirming environment that helps to aid in the recovery of those impacted by depression and bipolar. The meetings typically focus on identifying tools that will enable individuals to live a more fulfilling life while coping with depression and bipolar. It has been our experience that is very helpful to learn from the experiences of others. | |
| C/O Genesis United Methodist Church 1601 Galbraith Ave SE Grand Rapids, MI 49546 | |
| Phone: | 616-450-6153 |
| Fax: | |
| Email: | dbsa.segrandrapids@yahoo.com |
| Website: | |
| Holland Depression/Bipolar Support Alliance | |
| Meet first and third Thursday of the month. 6:00pm to 7:30pm | |
| 704 Michigan Avenue Holland, MI 49423 | |
| Phone: | 616-335-2548 |
| Fax: | (616) 355-7205 |
| Email: | dbsa.holland@yahoo.com |
| Website: | www.dbsalliance.org/hollandmi |
| Cancer | |
| American Cancer Society, Great Lakes Division, Inc. | |
| Area offices provide services in Michigan. Call for information on local services in nearly every Michigan county. Ask about the free camp for children who have or have had cancer, and the scholarship program. | |
| 3100 West Rd. Bldg. B Suite 110 East Lansing, MI 48823 | |
| Phone: | 1-517-332-3300 |
| Fax: | 517-664-1425 |
| Email: | |
| Website: | www.cancer.org |
| Barbara Ann Karmanos Cancer Institute | |
| Offers many cancer support groups for patients and their families, including a group for well children ages 6-16 on a monthly basis. * Ask for the Department of Community and Supportive Services. | |
| Wertz Cancer Center Room 1216 4100 John R Detroit, MI 48201 | |
| Phone: | 1-800-KARMANOS (527-6266) |
| Fax: | 313-576-9285 |
| Email: | supportservices@karmanos.org |
| Website: | www.karmanos.org |
| FORCE, Southeast Michigan | |
| Southeast Michigan | |
| Phone: | 248-854-2318 |
| Fax: | |
| Email: | ellyn@facingourrisk.org |
| Website: | |
| FORCE: Facing Our Risk of Cancer Empowered | |
| Resources, information, support specific to hereditary breast and ovarian cancer. We have a website, free quarterly newsletter, national conference, and outreach networks which meet regularly (including two groups in Michigan). | |
| 16057 Tampa Palms Blvd. W. #373 Tampa, FL 33647 | |
| Phone: | 866-288-7475 |
| Fax: | 954-827-2200 |
| Email: | info@facingourrisk.org |
| Website: | www.facingourrisk.org |
| Michigan Carcinoid Group | |
| Sharing information, Caring for each other. We are a group of 70 individuals with a rare form of cancer : Neuroendocrine Tumors, Carcinoid. We meet bi-monthly to exchange information and support each other. We can be an excellent resource for information on the latest treatments for this rare cancer and information about Doctors that specialize in the disease. We are friendly, there is no charge to belong or participate in our meetings. | |
| C/O David Vickery 2461 Shears Crossing Ct.NE Grand Rapids, MI 49525 | |
| Phone: | 616-450-0842 |
| Fax: | 616-447-8550 |
| Email: | Dave.vickery2008@gmail.com |
| Website: | n/a |
| Providence Cancer Institute | |
| Offers a variety of cancer support groups and programs. Contact Jennifer Gillette for more information. | |
| Providence Pavillion 22255 Greenfield Rd Suite 300 Southfield, MI 48075 | |
| Phone: | 248-849-3243 |
| Fax: | (248)849-2899 |
| Email: | Jennifer.Gillette@stjohn.org |
| Website: | www.realmedicine.org/ProvidenceCancer/ |
| Sparrow Cancer Center | |
| We have a breast cancer support group that meets monthly. We also have a prostate support group that meets monthly | |
| 1215 E. Michigan Ave. Lansing, Mi 48909-7980 | |
| Phone: | 517-364-2689 |
| Fax: | 517-487-3148 |
| Email: | |
| Website: | www.sparrow.org |
| The Candlelighters Childhood Cancer Foundation | |
| Contact staff for information on statewide groups in Michigan. | |
| 55527 Parkview Shelby Twp, MI 48316 | |
| Phone: | 586-484-9500 |
| Fax: | |
| Email: | diliberti@comcast.net |
| Website: | www.candlelightersofmichigan.org/ |
| The Wellness Community of Southeast Michigan | |
| All services are FREE of charge. Join others in weekly groups for friends and family or people with cancer. We monthly groups for breast cancer, after cancer treatment, spirituality and grief. Call for details and times. | |
| 2010 Hogback Road, Suite 3 Ann Arbor, MI 48105 | |
| Phone: | 734-975-2500 |
| Fax: | 734-975-2525 |
| Email: | bonnie@twc-semich.org |
| Website: | www.thewellnesscommunity.org/semich |
| Us TOO International Prostate Cancer Education & Support Network | |
| Us TOO International is a grassroots non-profit prostate cancer education and support network of 325 chapter support groups worldwide, providing men and their families with free information, materials and peer-to-peer support so they can make informed choices on detection, treatment options and coping with ongoing survivorship. Us TOO's materials span the full range of prostate cancer, from early detection to new diagnosis and advanced disease. The Us TOO Web site (www.ustoo.org) – with about 5 million hits a year – is one of the most visited prostate cancer informational Web sites available. Founded in 1990 by five men who had been treated for prostate cancer, the organization derived its name from the notion that “Us TOO” might work for prostate cancer as well as the “Y-ME” name did for breast cancer. A registered 501(c)(3) nonprofit organization, Us TOO International holds the highest 4-Star fiscal management rating from Charity Navigator for 3 years in a row. | |
| 5003 Fairview Ave Downers Grove, IL 60515-5286 | |
| Phone: | 800-808-7866 |
| Fax: | 630-795-1602 |
| Email: | ustoo@ustoo.org |
| Website: | www.ustoo.org |
| Cardio-Facio-Cutaneous Syndrome | |
| Cardio-Facio-Cutaneous International | |
| Provides information and support to families affected by CFC. Please visit the website for more information. | |
| 183 Brown Road Vestal, NY 13850 | |
| Phone: | 607-772-9666 |
| Fax: | |
| Email: | info@cfcsyndrome.org |
| Website: | www.cfcsyndrome.org/ |
| Celiac Disease | |
| Celiac Sprue Association/USA Inc., Mid-Michigan Celiac Support Group | |
| Support group meets four times a year. For more information contact Pat Adams at 989-743-3990 | |
| Patricia M. Adams, 4401 East Riley Road, Owosso, MI 48867-9094 | |
| Phone: | (989) 743-3990 |
| Fax: | |
| Email: | |
| Website: | www.csaceliacs.org |
| Celiac Sprue Association/USA Inc., Traverse Area Gluten Free Support Group | |
| Meetings provide resources and information for celiacs and their caregivers in a relaxed, supportive group and are open to all interested people. Contact information available for additional northern MI areas. | |
| c/o Sandra Cartwright P.O. Box 4112 Traverse City, MI 49685-4112 | |
| Phone: | 231-947-8324 - Sandy |
| Fax: | |
| Email: | scarttc@aol.com |
| Website: | www.csaceliacs.org |
| Celiac Sprue Association/USA Inc.,Michigan Capital Celiacs/DH Chapter | |
| Monthly meetings include information on Celiac Disease, gluten free products,social adjustment to the gluten free diet, recipe ideas and other topics of interest to members. Monthly newsletter covering many topics associated with Celiac Disease.Sponsors a gluten free children's camp and a yearly gluten free vendor fair. Also, visit our local website at http://micapitalceliacs.atspace.com and our Cel-Kids website at http://health.groups.yahoo.com/group/cel-kids. | |
| P.O. Box 23222 Lansing, Mi., 48909 | |
| Phone: | 517-349-0294 - Greta |
| Fax: | |
| Email: | micapceldh@gmail.com |
| Website: | micapitalceliacs.atspace.com |
| Gluten-Free Ann Arbor | |
| Gluten-Free Ann Arbor is a support group for people with celiac disease and other gluten intolerance in the Ann Arbor, Michigan, area. New people are welcome! | |
| c/o Valerie Mates 2907 Logan Court Ann Arbor, MI 48108 | |
| Phone: | |
| Fax: | |
| Email: | gfaa@unixmama.com |
| Website: | groups.yahoo.com/group/glutenfreeannarbor/ |
| Greater Grand Rapids Celiac Support Group | |
| Provides support, friendship and resource materials for learning about the celiac diet. Anyone can come. Our meetings are relaxed and friendly. We welcome everyone! Meetings are the third Monday of every month at 7:00 at Spectrum Health Rehab and Nursing Center, 750 Fuller NE, Grand Rapids, Main Floor- Meeting Room. New members come at 6:30 | |
| Nancy Carlson Grandville, MI | |
| Phone: | 616-534-6091 |
| Fax: | |
| Email: | celiacsupport@sbcglobal.net |
| Website: | www.csaceliacs.org |
| Tri County Celiac Sprue Support Group | |
| A support organization for Oakland, Wayne and Macomb counties serving persons with celiac disease and/or dermatitis herpetiformis, their family and friends. Meets quarterly September through March. Participates in food fair and research walk. | |
| Mary Guerriero 26412 Warrington Dearborn Heights, MI 48127 | |
| Phone: | 313-274-9232 |
| Fax: | |
| Email: | mjpinnick@mac.com |
| Website: | www.tccsg.com/ |
| Cerebral Palsy | |
| United Cerebral Palsy Association of Detroit | |
| UCP Detroit is committed to understanding disabilities and creating opportunities, for persons with all disabilities, by providing services such as information and referrals, advocacy for inclusion, community integration, technical assistance outreach,information about Social Security benefits planning, and advocacy support. | |
| 23077 Greenfield Rd., Ste 205 Southfield, MI 48075-3745 | |
| Phone: | 248-557-5070 voice/TTY |
| Fax: | 248-557-0224 |
| Email: | main@ucpdetroit.org |
| Website: | www.ucpdetroit.org |
| United Cerebral Palsy of Michigan | |
| UCP Michigan is the statewide advocacy organization of Michigan's 35,000 citizens with cerebral palsy. Services include: consultation and technical assistance; consumer education and rights training; public education; systems advocacy and public policy advocacy. | |
| 4970 Northwind Drive, Suite 102 East Lansing, MI 48823 | |
| Phone: | 1-800-828-2714 voice/TDD |
| Fax: | 517-203-1203 |
| Email: | ucp@ucpmichigan.org |
| Website: | www.ucp.org/ucp_local.cfm/87 |
| Charcot-Marie-Tooth Syndrome | |
| Detroit Area Charcot-Marie-Tooth Syndrome | |
| E-mail Lainie for more information | |
| 2700 Chestnut Street Chester, PA 19013-4867 | |
| Phone: | 800-606-2682 |
| Fax: | |
| Email: | familiaphillips@sbcglobal.net |
| Website: | |
| Southwest Michigan CMT Support Group | |
| Meetings will be held on the third Thursday of every other month January, March, May, July, September, November)from 6:00 to 8:00 p.m.at Richland Bible Church in Room 316. This group is associated with the CMTA and MDA. | |
| Richland Bible Church, Room 316 8643 Gull Rd. Richland, Michigan 49083 | |
| Phone: | 269-341-4415 |
| Fax: | |
| Email: | drreijonen@aol.com |
| Website: | |
| Chromosome Disorders | |
| The Chromosome 18 Registry and Research Society | |
| To help individuals with Chromosome 18 abnormalities overcome the challenges they face so they might lead happy, healthy, and productive lives. | |
| Melanie Gorrell 106 Meadowview Lane Greenwood, IN 46142 | |
| Phone: | 317-881-3139 |
| Fax: | 210-657-4968 |
| Email: | office@chromosome18.org |
| Website: | www.chromosome18.org |
| Colitis | |
| Crohn's and Colitis Foundation of America, Inc. Michigan Chapter | |
| Services include support group meetings, educational services, brochures, educational meetings, and fundraising for research and education. | |
| 31313 Northwestern Hwy., Ste 204 Farmington Hills, MI 48334 | |
| Phone: | 248-737-0900 |
| Fax: | 248-737-0904 |
| Email: | michigan@ccfa.org |
| Website: | www.ccfa.org |
| Congenital Adrenal Hyperplasia (CAH) | |
| Neonatal Endocrine Screening, Coordinating, and Follow-up Program | |
| Coordinates medical follow-up for children identified by the state newborn screening program. Provides referrals and information on congenital adrenal hyperplasia, cystic fibrosis, and hypothyroidism. | |
| c/o University of Michigan Medical Center MPB D1221, Box 5718 1500 East Medical Ctr Dr. Ann Arbor, MI 48109-5718 | |
| Phone: | 734-647-8938 |
| Fax: | 734-936-7918 |
| Email: | |
| Website: | |
| Conradi-Hunermann Syndrome | |
| Conradi-Hunermann Support Parent | |
| Support for families with a member with CHONDRODYSPLASIA-PUNCTATA, including Conradi’s Syndrome, Conradi Hunerman Syndrome. | |
| c/o Tim Krockta Shelby Twp, MI | |
| Phone: | 586-786-5957 |
| Fax: | |
| Email: | |
| Website: | |
| Cornelia De Lange Syndrome | |
| Cornelia De Lange Syndrome Foundation | |
| Provides information, support and referral for people who have a family member with CdLS. Call for name of local contact person. | |
| 302 W Main, 100 Avon, CT 06001 | |
| Phone: | 1-800-753-CDLS |
| Fax: | 860-676-8337 |
| Email: | info@cdlsusa.org |
| Website: | www.cdlsusa.org |
| Craniofacial Conditions | |
| Craniofacial Anomalies and Oral Cleft Center | |
| Call for parent-to-parent referral. Provides treatment for children with cleft lip/palate or other craniofacial malformations. | |
| Children's Hospital of Michigan 3901 Beaubien Blvd. Detroit, MI 48201 | |
| Phone: | 313-745-0247 |
| Fax: | 313-993-8783 |
| Email: | |
| Website: | |
| Facing Forward | |
| Provides informational booklets, videotapes and parent phone network. Sponsored by the University of Michigan Craniofacial Anomalies Program. | |
| 1500 East Medical Ctr. Dr. F7859 Mott Ann Arbor, MI 48109-0219 | |
| Phone: | 1-800-863-6227 |
| Fax: | 734-936-7815 |
| Email: | chesney@umich.edu |
| Website: | www.surgery.med.umich.edu/plastic/patient_family_care/pediatric |
| Iosco County Cleft Support | |
| Provides one-on-one support, referral information, literature, and telephone networking. Group meetings held as needed. On line support and networking for the whole state. | |
| c/o Jeanne Hebner 4071 Forest Oscoda, MI 48750 | |
| Phone: | 989-739-3815 |
| Fax: | |
| Email: | sable58@yahoo.com |
| Website: | www.MiCleft.org |
| Michigan Cleft Network | |
| Michigan's 1st network of it's kind! Non-profit organization dedicated to enriching Michigan individuals and families born with craniofacial anomalies. FREE services not limited to: Information, resources, ACPA team listings, feeding options, social and speech development, medical reports, community forum-chat-listserv, library, gallery, webring, webpages and the MiCleft Angel Program. We make family connections and can match you with a peer counselor who's been through similar experiences. When Michigan families need resources and understanding...there's MiCleft! Toll-Free 888-MICLEFT | |
| MiCleft-Executive Director Teresa Croughen 4468 Gertrude Street Dearborn Heights MI 48125 | |
| Phone: | 313-590-6000 |
| Fax: | |
| Email: | Admin@MiCleft.org |
| Website: | www.MiCleft.org |
| Cystic Fibrosis | |
| Cystic Fibrosis Center, Ann Arbor | |
| Provides clinical services for patients with cystic fibrosis. Periodic newsletter and family events. | |
| A. Alfred Taubman Health Care Center 1500 East Medical Center Drive Floor 1, Room 1334, Reception D Ann Arbor, MI 48109-5318 | |
| Phone: | 734-764-4123 |
| Fax: | 734-936-7635 |
| Email: | lfattori@umich.edu |
| Website: | www.med.umich.edu/mott/cysticfibrosiscenter/ |
| Cystic Fibrosis Center, Detroit | |
| Provides comprehensive medical services for patients with cystic fibrosis in an accredited, multidisciplinary clinic. Yearly educational program, newsletters, and support group for families. | |
| Children's Hospital of Michigan 3901 Beaubien Blvd. Detroit, MI 48201 | |
| Phone: | 313-745-5541 |
| Fax: | 313-993-2948 |
| Email: | |
| Website: | |
| Cystic Fibrosis Foundation - Greater Michigan Chapter- Saginaw | |
| Provides education, service and research. | |
| 3064 Boardwalk Dr. Saginaw, MI 48603-2324 | |
| Phone: | 989-790-3044 |
| Fax: | 989-790-1050 |
| Email: | saginaw-mi@cff.org |
| Website: | www.cff.org |
| Cystic Fibrosis Foundation - Greater Michigan Chapter, Western Region | |
| Holds periodic meetings; fund-raising activities. | |
| 551 36th St. SE, Ste C Grand Rapids, MI 49548 | |
| Phone: | 1-800-968-1050 |
| Fax: | 616-241-2101 |
| Email: | grapids-mi@cff.org |
| Website: | www.cff.org |
| Cystic Fibrosis Foundation - Metropolitan Detroit Chapter | |
| Funds medical research for the eradication and treatment of cystic fibrosis. Promotes public awareness of CF through educational programs and materials; provides health care professionals and concerned individuals with the most current information related to research and treatment. Supports legislation that will enhance the quality of life for individuals with cystic fibrosis. | |
| 2265 Livernois, Ste 410 Troy, MI 48083-1606 | |
| Phone: | 248-269-8759 |
| Fax: | 248-362-2608 |
| Email: | detroit@cff.org |
| Website: | www.cff.org |
| Cystic Fibrosis Foundation Ann Arbor Office | |
| Conducts fund-raising projects to provide, research, education and patient care dollars. | |
| 2265 Livernois st. Suite 410 Troy, MI 48083 | |
| Phone: | 248-269-8759 |
| Fax: | |
| Email: | |
| Website: | |
| Cystic Fibrosis Parent Support | |
| Parent contact and provides one-on-one support as needed. | |
| c/o Nancy Ozinga 997 76th St, SE Byron Center, MI 49315 | |
| Phone: | 616-698-0136 |
| Fax: | |
| Email: | |
| Website: | |
| Cystinosis | |
| Cystinosis Foundation, Inc. | |
| Provides support and education. Family medical conferences in the U.S. and Internationally. Local contacts in Michigan are available. | |
| 604 Vernon Street Oakland, CA 94610 | |
| Phone: | 800-392-8458 |
| Fax: | |
| Email: | Email@Cystinosis.com |
| Website: | www.cystinossfoundation.org |
| Deaf-Blind | |
| DB Central; Michigan Services for Children and Youth who are Deaf-Blind | |
| A Comprehensive statewide technical assistance project. We provide information, training, and support for families and/or professionals who are impacted by or associated with a child who is deaf-blind. Services are provided year-round, free of charge and can be accessed until the individual has left their educational setting. | |
| 105 Sloan Central Michigan University Mt. Pleasant, MI 48859 | |
| Phone: | 888-758-0508 voice/TTY |
| Fax: | 989-774-1572 |
| Email: | dbcen@cmich.edu |
| Website: | www.dbcentral.org |
| National Family Association for Deaf-Blind | |
| Supports families and individuals of any age who are deaf-blind (including CHARGE, Usher, and Rubella syndromes) through advocacy, national policy development, information and referrals, and development of training materials and seminars for family members. Newsletter published tri-annually. | |
| 141 Middle Neck rd Sanspoint NY 11050 | |
| Phone: | 800-255-0411 |
| Fax: | 516-883-9060 |
| Email: | l.syler@cox.net |
| Website: | |
| Depression | |
| DBSA: Saginaw Christian Center Bipolar Support Center MI | |
| 3309 Mackinaw St. Saginaw, MI 48602 | |
| Phone: | 989-321-0873 |
| Fax: | |
| Email: | bipolarsupportmi@gmail.com |
| Website: | www.bipolarsupport.us |
| Depression and Bipolar Illness Support Groups | |
| 7-8:15pm on the 2nd and 4th Wed. of every month. Group A: for Adults with Depression and Bipolar Illness Group B: for Adolescents and College Aged Persons with Depression and Bipolar Illness (call to see if this group is running) Group C: for Family Members of Persons with Depression and Bipolar Illness These three groups are offering opportunities to share idea for coping, link with community resources, develop a support network, learn about depression and bipolar illness, as well as discuss issues of stigma. | |
| Depression Center and Ambulatory Psychiatry facility Rachel Upjohn building 4250 Plymouth Rd. Ann Arbor, MI 48109 | |
| Phone: | 800-475-6424 |
| Fax: | |
| Email: | |
| Website: | |
| Depression and Bipolar Support Alliance of Metro Detroit | |
| PO Box 371, Clawson, MI 48017-0371 | |
| Phone: | 248.689.6110 |
| Fax: | |
| Email: | dbsametrodetroit@att.net |
| Website: | www.dbsa-metrodetroit.org/ |
| Depression BiPolar Support Alliance | |
| We meet every tuesday in the Mortimer Room of Mercy Hospital at 6pm and normally ends at 7pm. An informal group setting where those of us discuss our issues on any given topic. Come and feel better! | |
| 502 East Division, Cadillac, MI 49601 for mailing. We meet at Mercy Hospital-400 Hobart Street in Cadillac | |
| Phone: | 231-920-3411 |
| Fax: | |
| Email: | louierichardson@gmail.com |
| Website: | |
| Northeast Michigan Depression Bipolar Support Alliance | |
| Support Groups Monday: Parent Empowerment, Anger Management Tuesday: Healing Rooms, Teen Empowerment, Support Group for 18 years and older Wednesday: Support Group for 60 years and older Thursday: Support Group for 18 years and older, DRA Support Group Friday: Christian Visits (Support Group) Office Hours: Monday, Tuesday, Thursday, Friday from 10 a.m. until 4 p.m. Wednesday from 1 p.m. until 4 p.m. | |
| 112 Water Street Alpena, Michigan 49707 | |
| Phone: | 989-354-4470 |
| Fax: | |
| Email: | nemdbsa@speednetllc.com |
| Website: | |
| Postpartum Depression Support Group | |
| We offer a postpartum depression support group to help support women adjusting to the challenges of new motherhood and those experiencing extended baby blues. Support Groups are offered Evenings: Every first and third Tuesday at 8 p.m. and Mornings: Every second and fourth Tuesday at 9:30 a.m | |
| Spectrum Health-Healthier Communities 665 Seward Ave. NW Ste. 110 Grand Rapids, MI 49504 | |
| Phone: | (616) 391-5000 |
| Fax: | |
| Email: | |
| Website: | www.spectrum-health.org/postpartumdepression |
| Developmental Disabilities | |
| The Arc of Dearborn/Dearborn Heights | |
| Providing advocacy and services for children and adults with developmental disabilities and their families. | |
| 27325 W. Warren Dearborn Heights, MI 48127 | |
| Phone: | 313-562-1787 |
| Fax: | 313-562-0387 |
| Email: | ArcPDP@aol.com |
| Website: | www.arcdearborn.org |
| Diabetes | |
| American Diabetes Association, Michigan Affiliate | |
| Provides information and referral; maintains listing of diabetes support groups. | |
| 30200 Telegraph Rd., Ste 105 Detroit, MI 48025 3940 Broadmoor Ave. SE Ste. 100 Grand Rapids, MI 49512 | |
| Phone: | 1-800-342-2383 |
| Fax: | 248-433-1095 |
| Email: | |
| Website: | www.diabetes.org/home.jsp |
| Juvenile Diabetes Research Foundation - West Michigan Chapter | |
| Primary mission is raising dollars to find a cure. JDRF provides support and education through special events such as our walk program, gala, golf and donations. JDRF offers a mentoring program for newly diagnosed families. | |
| 4362 Cascade Rd. SE, Ste 109 Grand Rapids, MI 49546 | |
| Phone: | 616-957-1838 |
| Fax: | 616-957-1169 |
| Email: | westmichigan@jdrf.org |
| Website: | www.jdrf.org/westmichigan |
| Mercy Hospital Cadillac - Diabetes Support Group | |
| The diabetes support group meets the first Tues of each month from 1-2:00pm in the Dublin Room at the McAuley Center directly across from the hospital entrance. It is free to the community. Each month there is a speaker on a topic regarding diabetes. | |
| 400 Hobart St Cadillac, MI 49601 | |
| Phone: | 231-876-7183 |
| Fax: | 231-876-7071 |
| Email: | |
| Website: | |
| UP Diabetes Outreach Network | |
| We meet monthly January through May and September through November. We meet at Munising Memorial Hospital's conference room. Call to find out date and time. Contact Paula at 906-387-4110 ext. 134 | |
| Muinising Memorial Hospital 1500 Sand Point Rd. Munising, MI 49862 | |
| Phone: | 906-387-4110 |
| Fax: | |
| Email: | yooperfive@hotmail.com |
| Website: | www.diabetesinmichigan.org |
| Down Syndrome | |
| Capital Area Down Syndrome Association | |
| Our mission is to disseminate information about Down syndrome to families, persons with Down syndrome and health care professionals. Also to offer support to persons with Down syndrome and their families. | |
| PO Box 25112 Lansing, MI 48909-5112 | |
| Phone: | 517-575-4308 |
| Fax: | |
| Email: | lansingdownsyndrome@yahoo.com |
| Website: | www.lansingdownsyndrome.org |
| Down Syndrom Guild of Southeast Michigan | |
| A nonprofit family support group serving Southeast Michigan including Macomb, Oakland, Wayne, St. Clair, Livingston, Lapeer and Genesee Counties. Monthly support meetings (third Tuesday), newsletter, playgroup (second Saturday), family activities, speakers, hospital visits, and new member packets. Check our website for more information. Parent Contacts:248-646-0819 | |
| P.O. Box 522 Royal Oak, MI 48066-0522 | |
| Phone: | 248-646-0819 |
| Fax: | 248-594-9658 |
| Email: | info@dsgsemi.org |
| Website: | dsgsemi.org |
| Down Syndrome Association of Northwest Michigan | |
| 327 Wenonah Traverse City, MI 49686 | |
| Phone: | 231-313-2729 |
| Fax: | |
| Email: | |
| Website: | www.dsupnorth.org |
| Down Syndrome Association of West Michigan | |
| The DSAWM is a resource and advocacy organization, promoting public awareness and supporting lifelong opportunities for individuals with Down syndrome and their families. We provide information and materials (Guide for New & Expectant Parents, Teacher Information Packet, DSA Press monthly newsletter, etc.), an extensive resource library, conferences and workshops and various support groups for members of different ages. | |
| PO Box 888164 Grand Rapids, MI 49588 | |
| Phone: | 616-956-3488 |
| Fax: | 616-974-9612 |
| Email: | dsawm@iserv.net |
| Website: | www.dsawm.org |
| Families Exploring Down Syndrome | |
| Serves Macomb, Oakland, and Wayne counties. Monthly support meetings (second Wednesday), newsletter, family activities, speakers, hospital visits, members lending library and doctor/hospital folders. Changing Lives Presentations for the professionals. See web site for information. | |
| P.O. Box 1191 Sterling Hts, MI 48311-1191 | |
| Phone: | 586-997-7607 |
| Fax: | 586-977-1971 |
| Email: | fedsyndrome@aol.com |
| Website: | www.familiesexploringdownsyndrome.org |
| Never Say Never | |
| Support group serving the tri-city area provides information and resources for parents of children with Down Syndrome. We have resources, speakers available, on call parent to visit hospitals. | |
| c/o Trish and Joe Bronz 5355 S Glen Oak Dr. Saginaw, MI 48603 | |
| Phone: | 989-799-8654 |
| Fax: | 989-498-0137 |
| Email: | jbronz5355@aol.com |
| Website: | |
| Special Parents Initiative for Down Syndrome Education & Resources | |
| We are a group of concerned family and friends that have been brought together by one common denominator, all of us are blessed with having a child with Down Syndrome in our lives. Most of us were not prepared for the sudden and often drastic changes in our lives that occur, when a "Special Needs Child," comes into our life. One universal concern has been the lack of adequate information and services that are immediately available to assist our families. There are many questions in the first few hours and weeks of our child's life that need to be addressed, such as medical, physiological and emotional. We are here to answer these questions and to make available any resources to our families. This will insure that our children have the greatest advantages from the beginning and throughout their lives. Meetings: 1 per month in Lapeer - see web site for details! | |
| 706 W. Nepessing Lapeer, MI 48446 | |
| Phone: | 810-245-3797 |
| Fax: | |
| Email: | prez@lapeerspider.org |
| Website: | www.lapeerspider.org |
| St. Clair County Down Syndrome Support Group | |
| Support group for Down Syndrome meets on the 3rd Monday of each month at Woodland School, 499 S. Range Rd., Marysville, September through May. | |
| c/o Kelly DiNardo 7430 Rattle Run Road Saint Clair, MI 48079 | |
| Phone: | 810-367-2045 |
| Fax: | |
| Email: | |
| Website: | |
| Washtenaw Down Syndrome Support Group | |
| We meet once a month on Sunday afternoons at a private home - the whole family is invited. Guest speakers are invited and there is always time to connect with other families. | |
| c/o Debita Graham 2375 S 7th St. Ann Arbor, MI 48103 | |
| Phone: | 734-717-0190 |
| Fax: | |
| Email: | debita@umich.edu |
| Website: | |
| Dyslexia | |
| Dyscalculia.org AKA Dyslexia & Dyscalculia Support Services | |
| We are a global consortium of experts in the field who offer diagnostic testing, individual/family/faculty counseling/support/advising, remedial training for students, best practices teacher-training, support groups, workshops, online remedial programs, summer remedial programs, and in-school remedial programs. We also educate institutions on matters of compliance with disability laws in education and work settings. | |
| 7420 Calhoun Street Dearborn, Michigan 48126 | |
| Phone: | 313-300-1901 |
| Fax: | |
| Email: | mail@dyscalculia.org |
| Website: | www.dyscalculia.org |
| Ehlers-Danlos Syndrome | |
| Ehlers-Danlos National Foundation | |
| For current information on a branch in Michigan, contact the national office. | |
| 3200 Wilshire Blvd. Suite 1601, South Tower Los Angeles, California 90010 | |
| Phone: | (213) 368 -3800 |
| Fax: | (213) 427-0057 |
| Email: | staff@ednf.org |
| Website: | www.ednf.org |
| Emotional health | |
| EMOTIONS ANONYMOUS | |
| EA is a 12 Step Program to help anyone who is wanting to become well emotionally. To find a meeting close to you please visit the EA web site at www.emotionsanonymous.org Click on "Find your nearest meeting" then enter your zip code then enter again for the results. Best wishes. | |
| 2233 University Ave # 402 St. Paul, MN 55114 | |
| Phone: | 651-647-9712 |
| Fax: | 651-647-1593 |
| Email: | Info@emotionsanonymous.org |
| Website: | www.emotionsanonymous.org |
| Epidermolysis Bullosa | |
| befriend EB | |
| Provides financial assistance to children and adults living with Epidermolysis Bullosa to purchase the medical supplies to make everyday life with EB bearable. Also promotes public awareness about Epidermolysis Bullosa. | |
| c/o Julie Turner P.O. Box 1124 Sterling Hts., MI 48311 | |
| Phone: | 586-206-4986 |
| Fax: | |
| Email: | |
| Website: | www.befriendeb.com |
| Wayne-Westland Friends of EB | |
| Serving families in the greater Wayne-Westland area whose children suffer from epidermolysis bullosa. | |
| WWFEB P.O. Box 851092 Westland, MI 48185 | |
| Phone: | 734-844-1899 |
| Fax: | |
| Email: | friends@wwfeb.org |
| Website: | www.wwfeb.org |
| Epilepsy | |
| Epilepsy Foundation of Michigan | |
| The Epilepsy Foundation of Michigan provides education and consultation services, public awareness, camp programs, support services, advocacy, and employment guidance for people with epilepsy, their families and the general public. | |
| 20300 Civic Center Drive Suite 250 Southfield, MI 48076 | |
| Phone: | 1-800-377-6226 |
| Fax: | 248-351-2101 |
| Email: | letters@epilepsymichigan.org |
| Website: | www.epilepsymichigan.org |
| Fetal Alcohol Syndrome | |
| FASD Living | |
| Offering support, education, and public awareness for the community. Support group meets the first Thursday of each month at 7:00 pm at St. Joseph Mercy Livingston hospital on Byron Rd. in Howell. Meetings are held in the cafeteria conference room. Also, we are actively involved in educating school social workers, teachers of special education, parents, teens, and law enforcement. | |
| 3471 E. Grand River Howell, MI 48843 | |
| Phone: | 810-599-9399 |
| Fax: | |
| Email: | fasdliving@comcast.net |
| Website: | |
| Fetal Alcohol Syndrome Disorders Family Support Group | |
| Third Thursday of each month at 6:30pm. For parents, grandparents, foster and adoptive parents, any caregiver of a child diagnosed or suspected to have challenges resulting from prenatal alcohol exposure. Contact Mary Schalk at 800/354-2880 or maryschalk@verizon.net | |
| held at the Partners in Prevention Office 3022 US 23 South Alpena, MI 49707 | |
| Phone: | 800-354-2880 |
| Fax: | |
| Email: | maryschalk@verizon.net |
| Website: | |
| Fetal Alcohol Syndrome Support | |
| Contact Patty for information regarding Fetal Alcohol Syndrome. Most of the support offered is over the phone (and in person) with parents,teachers, etc. | |
| c/o Patty Brewer 1125 Franklin SE Grand Rapids, MI 49507 | |
| Phone: | 616-245-1424 |
| Fax: | |
| Email: | mombrewer007@yahoo.com |
| Website: | |
| Living, Understanding and Loving Those with Fetal Alcohol Spectrum Disorder | |
| This is a new group to help those families blessed to be raising these unique children through adoption or foster care. This group is to help connect people for ideas and support. Shoulders to cry on and cheers of accomplishment not matter how small. Please email me and lets connect! | |
| Hillsdale,MI | |
| Phone: | 517-797-5276 |
| Fax: | |
| Email: | lultfasd@yahoo.com |
| Website: | |
| Macomb Coalition for Fetal Alcohol Resource Education & Support | |
| Online support group for Michigan families: http://groups.yahoo.com/group/FaSAFASD/ MCFARES is the Michigan NOFAS Affiliate | |
| c/o Arc 44050 N. Gratiot Clinton Township, MI 48036 | |
| Phone: | 586-329-6722 |
| Fax: | |
| Email: | charisse@MCFARES.org |
| Website: | www.MCFARES.org |
| National Council on Alcoholism/Lansing Regional Area, Inc. | |
| Offers an intensive outpatient program, with outpatient treatment as well as assessments. | |
| 3400 South Cedar Street, Suite 200 Lansing MI 48910 | |
| Phone: | 517/887-0226 |
| Fax: | |
| Email: | |
| Website: | www.ncadd.org |
| Parents Supporting Parents | |
| Provides support, education and advocacy for families of people with FAS. Group meets monthly on the 4th Wednesday of the month Jan.-Nov. at the St. Joseph Mercy Hospital in the Education Center Classroom 5 from 7-9pm. | |
| Ann Arbor, MI | |
| Phone: | 734-662-2906 - Betsy or Vern |
| Fax: | |
| Email: | |
| Website: | |
| Parents Supporting Parents | |
| A support group for families parenting children/adults affected by prenatal alcohol exposure. Meets the 4th Wednesday of the month at St Joseph Mercy Hospital's Education Center's classroom #5 in Ypsilanti from 7:00-9:00 p.m. No cost. No child care. | |
| 352 Manor Drive Ann Arbor,MI 48105 | |
| Phone: | 734-662-2906 |
| Fax: | 734-662-1736 |
| Email: | betsysoden@juno.com |
| Website: | |
| Project SAFE (Supportive Activities for Everyone) | |
| Monthly pot-luck, support and playgroup for families living with fetal alcohol spectrum disorders. We meet in Macomb County. Contact Charisse@mcfares.org for more info. Join the yahoo group for updated information. | |
| Macomb County | |
| Phone: | 586-329-6722 |
| Fax: | |
| Email: | |
| Website: | groups.yahoo.com/group/FaSAFASD/ |
| West Michigan FASD Support Group | |
| Meets 3rd Tuesday of the month. Facilitator: Barb Wybracht Co-facilitator: Corey Tait | |
| Westminster Presbyterian Church 47 Jefferson Ave. SE Grand Rapids, MI 49503 | |
| Phone: | (616)391-2319 |
| Fax: | |
| Email: | |
| Website: | |
| Fragile X Syndrome | |
| Fragile X Association of Michigan | |
| Mission: The Fragile X Association of Michigan unites the fragile X community to: - Enrich lives through educational and emotional support, - Promote public and professional awareness, and - Advance research toward improved treatments and a cure for Fragile X Syndrome. Monthly support group meetings are held at William Beaumont Hospital. Please call for dates and time. Some of our Annual Gatherings: December - Annual Holiday Family Party Summer - Annual Family Picnic, Annual Golf/Dinner Fundraiser Monthly support group meetings are held at William Beaumont Hospital in Royal Oak. Annual picnic and annual conference are also hosted. Parent contact: Laureen Majeski - 810-978-9078 | |
| P.O. Box 1414 Troy, MI 48099-1414 | |
| Phone: | 313-381-2834 |
| Fax: | |
| Email: | fraxmich@hotlinemail.com |
| Website: | www.fxam.org |
| FRAXA Research Foundation - Michigan Chapter | |
| Provides support and information to families and professionals involved with Fragile X Syndrome. | |
| c/o Wendy Dilworth 9170 Cotters Ridge Rd. Richland, MI 49083 Southeast Michigan Contact - Sally Nantais - sallyn423@wyan.org | |
| Phone: | 269-629-5890 Wendy |
| Fax: | |
| Email: | compose12@mei.net |
| Website: | www.fraxa.org |
| Fragile X-associated tremor/ataxia syndrome (FXTAS) | |
| Fragile X Association of Michigan | |
| P.O. Box 1414 Troy, MI 48099-1414 | |
| Phone: | 313-381-2834 |
| Fax: | |
| Email: | |
| Website: | www.fxam.org |
| Growth Disorders | |
| MAGIC Foundation | |
| The MAGIC Foundation is a national non-profit organization dedicated to providing support and education to families of children with growth related disorders. Currently we have 11 divisions -- Growth Hormone Deficiency, Russell Silver Syndrome, McCune Albright Syndrome, Congenital Adrenal Hyperplasia, Precocious Puberty, Turner Syndrome, Septo Optic Dysplasia, Panhypopituitarism, Adult Growth Hormone Deficiency, Genital and Reproductive Anomalies, and other Rare Disorders. We offer services such as a quarterly newsletter, national networking system, Kids Program, and parent help line. | |
| 6645 W. North Ave. Oak Park, IL 60302 | |
| Phone: | 800-362-4423 |
| Fax: | 708-383-0899 |
| Email: | mary@magicfoundation.org |
| Website: | www.magicfoundation.org |
| Hearing Loss | |
| Alexander Graham Bell Association for the Deaf - Michigan Chapter | |
| Provides services and resource information for those following the oral approach to communication for individuals with hearing impairment/deafness. Opportunities for parents to share their concerns with one another through meetings and conferences. Speech and language summer camp for children who are oral deaf and hard of hearing. Advocates for legislation to better serve hearing impaired persons. | |
| 2036 Chesaning SE Grand Rapids, MI 49506 | |
| Phone: | |
| Fax: | |
| Email: | |
| Website: | www.agbell.org |
| Communications Access Center for the Deaf and Hard of Hearing | |
| A non-profit agency that provides interpreter services, sign language classes, TTY relay, video relay services, mentorships, public education, information and referral, and case management. Also offers a residential program for developmentally disabled and mentally ill adults, and a senior citizen program for Genesee and Shiawassee counties. | |
| 1505 W. Court st. Flint, MI 48503 | |
| Phone: | 810-239-3112 voice/TTY |
| Fax: | 810-239-1606 |
| Email: | info@cacdhh.org |
| Website: | |
| Community Mental Health Services of Central Michigan | |
| Provides comprehensive mental health and preventative services for persons who are deaf or hard of hearing with focus on home based intervention and coordination of community resources. Services include: individual and family therapy, case management, psychiatric evaluation, psychosocial assessment, crisis intervention, and prevention services. | |
| Services for Deaf and Hard of Hearing Persons Kendra Miller, LMSW 301 S Crapo, Ste 200 Mt. Pleasant, MI 48858 | |
| Phone: | 989-772-5938 |
| Fax: | 989-775-7701 |
| Email: | kmiller@cmhcm.org |
| Website: | |
| Deaf and Hearing Impaired Services, Inc. | |
| A non-profit agency serving seven counties in southeast Michigan. Works with area groups to provide information and referrals, interpreting services, advocacy, support groups, assistive devices, sign language classes, social groups and trips, and newsletter. Targets senior citizen population but provides services to all ages. | |
| 25882 Orchard Lake Rd., Ste 100 Farmington Hills, MI 48336 | |
| Phone: | 248-473-1888 |
| Fax: | 248-474-7938 |
| Email: | deafsvcs@aol.com |
| Website: | www.dhisonline.org |
| Deaf Community Advocacy Network | |
| Provides a wide range of services to help bridge the gaps between the deaf and hearing worlds. Deaf CAN! sponsors The Deaf AIDS Project - support for those who are HIV positive, youth programs, summer camps, sign language interpreting, and a newsletter. Contact Marcy Colton for more information. | |
| 2111 Orchard Lake Rd., Ste 101 Sylvan Lake, MI 48320 | |
| Phone: | 248-332-3331 voice |
| Fax: | 248-332-7334 |
| Email: | deafcan@deafcan.org |
| Website: | www.deafcan.org |
| Deaf Options | |
| Offers a program for parents who are deaf; includes parenting skills, workshops, field trips, support groups, home visits and coordination of health care and educational resources. A Hard of hearing support group is also offered. Teen Options, crisis intervention, substance abuse services and case management are also offered. Call for additional services. New program H.A.T for deaf, mentally ill older/aging adults. | |
| 19145 Beech Daly Rd, Redford,MI 48239 | |
| Phone: | 313-592-3175 |
| Fax: | 313-592-3195 |
| Email: | deafoptions@msn.com |
| Website: | www.deafoption.org |
| Genesee County Community Mental Health Deaf Services | |
| Serves individuals who are deaf and hard of hearing with an identified mental health need or developmental disability. Services include: psychiatric evaluation, outpatient treatment, foster care, case management, consultation, advocacy, activity groups, and supported employment. Serves adults with hearing impairment and their families. | |
| 420 W. Fifth Ave. Flint, MI 48503 | |
| Phone: | 810-257-3714 |
| Fax: | 810-762-5234 |
| Email: | |
| Website: | |
| Hearing Loss Association of Michigan | |
| HLA-MI is a non-profit consumer organization who's mission is to open the world of communication to people with hearing loss by providing information, education, advocacy and support. We are a state organization of Hearing Loss Association of America located in Bethesday, MD. Programs include, a free electronic newsletter, Hearing Technology Resource Specialists that give presentations to interested groups about hearing loss and assistive technology throughout the state of Michigan. Our web site. state conference, walk4hearing and approximately 13 chapters throughout the state are also ways we reach out to HOH consumers. Advocacy and education efforts also include an annual Day at the State Capitol for hard of hearing and deaf people. | |
| P.O. Box 4808 Troy, MI 48099 | |
| Phone: | 517-487-2583 voice/TTY |
| Fax: | 517-487-2586 |
| Email: | info@hearingloss-mi.org |
| Website: | www.hearingloss-mi.org |
| Holley Ear Institute | |
| Holley Ear Institute is a non-profit organization founded in 1993. A consortium of medical and non-medical professionals that volunteer to educate local and hospital communities to the world of the Deaf and hard of hearing. They sponsor various community outreach programs and programs for families with at least one Deaf/hard of hearing member at their Family Village in Brooklyn, MI. | |
| St. John Hospital and Medical Center 22151 Moross rd.PB I #223 Detroit, MI 48236-2172 | |
| Phone: | 313-343-7484 |
| Fax: | 313-343-4111 |
| Email: | ardis.gardella@stjohn.org |
| Website: | www.stjohn.org/hei |
| Michigan Association for Deaf and Hard of Hearing | |
| MADHH is a statewide agency dedicated to improving the quality of life for individuals who are deaf, hard of hearing and speech impaired. The agency provides public education about deafness and hearing conservation through in-services for schools, organizations and businesses. Also provides information, referral and advocacy regarding the Americans with Disabilities Act. Has assistive equipment for loan and distribution. Provides interpreter service referrals. Offers several programs for youth during the year; Leadership Training School; substance abuse programs, HIV-AIDS and summer therapies for children. MADHH is a comprehensive program that incorporates the latest research information and technology applications. | |
| 2929 Covington Ct., Ste 200 Lansing, MI 48912-4939 | |
| Phone: | 1-800-YOUR-EAR voice/TTY (1-800-968-7327) |
| Fax: | 517-487-2586 |
| Email: | info@MADHH.org |
| Website: | www.madhs.org |
| University of Michigan Sound Support | |
| Mission Statement To improve the quality and timeliness of clinical care for pediatric hearing impaired patients, including diagnosis, treatment and rehabilitation of hearing loss. To serve as a liaison between families with children who are deaf/hard of hearing in order to facilitate and expedite early identification and intervention. To educate professionals regarding hearing impairment, the impact of hearing loss on development, and the necessity of appropriate intervention and rehabilitation. To provide professionals with the tools needed to better serve the rehabilitative needs of children who are deaf and hard of hearing. To measure the efficacy of these efforts and continually improve delivery of health care and educational services to children who are deaf and hard-of-hearing. Services are provided free of charge. | |
| F6866 Mott SPC 5241 1500 East Medical Center Drive Ann Arbor, MI 48109-5241 | |
| Phone: | 734-232-4953 |
| Fax: | 734-763-7802 |
| Email: | pamkuzel@med.umich.edu |
| Website: | www.med.umich.edu/childhearinginfo/index.htm |
| Heart Disease | |
| American Heart Association - Michigan Affiliate | |
| Maintains listings of stroke and heart support groups. | |
| 24445 Northwestern Hwy., Ste 100 Southfield, MI 48075 | |
| Phone: | 248-827-4214 |
| Fax: | 248-827-4234 |
| Email: | |
| Website: | www.americanheart.org |
| Ticker Club | |
| “Ticker Talk” Parent Support Group on the Second Saturday of the Month @ Children’s Hospital of Michigan from 11:00 A.M.-1:00 P.M. | |
| c/o Children's Hospital of Michigan Division of Cardiology 3901 Beaubien Blvd. Detroit, MI 48201 | |
| Phone: | 313-993-0133 |
| Fax: | 313-993-0894 |
| Email: | |
| Website: | gaindirectory.org/Lists/Gain%20Directory/DispForm.aspx?ID=140 |
| Hemophilia | |
| Hemophilia Foundation of Michigan | |
| Provides information, referral and educational services for patients and families with bleeding disorders. Provides psychosocial support; sponsors numerous support groups statewide. Summer camp program for children and teens; youth retreat; annual consumer education meeting. | |
| 1921 W. Michigan Ave Ypsilanti, MI 48197 | |
| Phone: | 1-800-482-3041 |
| Fax: | 734-544-0095 |
| Email: | hfm@hfmich.org |
| Website: | www.hfmich.org |
| Hemophilia Treatment Center-Children's Hospital of Michigan | |
| Support groups and educational programs and activities for parents of children with bleeding disorders. Usually held in a resturant setting (sponsored meals included) somewhere in the Detroit Metro Area. Focus of group meetings: education and networking Educational activities for patients and their families. Focus of activities: parenting classes, educational programs, interactive learning. | |
| Children's Hospital of Michigan 3901 Beaubien Blvd., Detroit, MI. 48201 | |
| Phone: | 313-993-0382 |
| Fax: | 313-745-5237 |
| Email: | dmerritt@dmc.org |
| Website: | |
| MSU Bleeding and Clotting Disorder Clinic | |
| Center for Bleeding and Clotting Disorders | |
| 2900 Hannah Blvd. Ste 202 East Lansing, MI 48823 | |
| Phone: | 1-800-759-5595 |
| Fax: | 517-353-9421 |
| Email: | Laura.Carlson@hc.msu.edu |
| Website: | |
| Hereditary Hemorrhagic Telangiectasia (HHT) | |
| HHT Foundation International, Inc. | |
| Organization provides support, information and direction to treatment centers regarding hereditary hemorrhagic telangiectasia (Osler-Rendu-Weber Syndrome). Holds international conferences. | |
| c/o Carol Gaertner 823 Fleetwood Dr. Saginaw, MI 48604 | |
| Phone: | 989-752-3342 |
| Fax: | |
| Email: | carolgaertner610@msn.com |
| Website: | www.hht.org |
| Huntington's Disease | |
| Huntington's Disease Society of America - Michigan Chapter | |
| Provides support and services to HD patients and their families. Support groups in Ann Arbor, Saginaw, Midland, Grand Rapids, Greater Genesee County, Kalamazoo, Lansing, Macomb County, Menominee, Mt. Pleasant, Royal Oak, Taylor, Traverse City. | |
| 1174 James Savage rd. Midland, MI 48640-5651 | |
| Phone: | 989-832-4170 |
| Fax: | 989-832-4171 |
| Email: | hdsami@att.net |
| Website: | www.hdsa-mi.com |
| Immune Deficiency | |
| Immune Deficiency Foundation | |
| The Immune Deficiency Foundation (IDF), founded in 1980, is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. On behalf of those with primary immunodeficiency diseases, IDF offers educational programs and materials that offer medical information, important life management and patient care resources, and support for patients and family members. IDF supports advocacy to promote healthcare legislation and policies that positively affect the primary immune deficiency community; and research and medical programs that improve diagnosis and treatment of primary immunodeficiency diseases. For more information,please visit the website or call the phone number listed above. | |
| National - Immune Deficiency Foundation 40 W. Chesapeake Ave. Ste 308 Towson, MD 21204 | |
| Phone: | 1-800-296-4433 |
| Fax: | |
| Email: | |
| Website: | www.primaryimmune.org |
| Infant Death - Any Cause | |
| Tomorrow's Child/Michigan SIDS | |
| Support groups and other services for anyone affected by the death of an infant. Develop programs and provide services to reduce infant mortality. | |
| 112 East Allegan, Suite 500 Lansing,MI 48933 | |
| Phone: | 1-800-331-7437 |
| Fax: | 517-485-0163 |
| Email: | info@tomorrowschildmi.org |
| Website: | www.tomorrowschildmi.org/ |
| Joubert Syndrome | |
| Joubert Syndrome Foundation & Related Cerebellar Disorders | |
| Provinces a registry of families, newsletter, parent conferences, research registry. In addition, there is a parent contact available in Michigan. | |
| 8 Ash, Jackson, NJ 08527 | |
| Phone: | |
| Fax: | |
| Email: | info@jsfrcd.org |
| Website: | www.jsfrcd.org |
| Kidney Disorders | |
| National Kidney Foundation of Michigan | |
| The foundation strives to prevent and eliminate diseases of the kidney and urinary tract, to enhance the quality of life of people with kidney disease through education, services, advocacy, and research. Also promotes organ and tissue donation. | |
| 1169 Oak Valley Dr. Ann Arbor, MI 48108 | |
| Phone: | 1-800-482-1455 |
| Fax: | 734-222-9801 |
| Email: | mferriter@nkfm.org |
| Website: | www.nkfm.org |
| National Kidney Foundation of Michigan - Detroit Regional Office | |
| Prevention, Education | |
| 1900 E. Jefferson #222 Detroit, MI 48207 | |
| Phone: | 313-259-1574 |
| Fax: | 313-259-1855 |
| Email: | dbeach@nkfm.org |
| Website: | www.nkfm.org |
| National Kidney Foundation of Michigan - Grand Rapids Regional Office | |
| 731 Front, NW Grand Rapids, MI 49504 | |
| Phone: | 616-458-9520 |
| Fax: | 616-458-9532 |
| Email: | |
| Website: | www.nkfm.org |
| Learning Disability | |
| International Dyslexia Association - Michigan Branch | |
| The Institute is a non-profit, educational organization serving children and adults with dyslexia. | |
| 1443 Kings Pointe Road Grand Blanc, MI 48439-8614 | |
| Phone: | 888-IDA-MICH |
| Fax: | |
| Email: | info@idamich.org |
| Website: | www.idamich.org |
| Learning Disabilities Association of Michigan | |
| Four chapters available statewide including one college chapters. | |
| 200 Museum Dr. Ste 101 Lansing, MI 48933 | |
| Phone: | 517-485-8160 |
| Fax: | 517-485-8462 |
| Email: | ldamich@sbcglobal.net |
| Website: | www.ldaofmichigan.org/ |
| Leukemia | |
| Children's Leukemia Foundation of Michigan | |
| Statewide organization provides information, financial assistance and emotional support to adults and children in Michigan affected by leukemia, lymphoma, and related blood disorders. A list of support groups throughout Michigan can be found on the website. | |
| 5455 Corporate Drive, Suite 306 | |
| Phone: | 1-800-825-2536 |
| Fax: | 248-530-3042 |
| Email: | info@leukemiamichigan.org |
| Website: | www.leukemiamichigan.org |
| Limb Deficiency | |
| Center For Limb Differences | |
| A multi-disciplinary team providing care for infants, children, and teens with hand, foot and limb differences. | |
| Mary Free Bed Rehabilitation Hospital 235 Wealthy St. SE Grand Rapids, MI 49503 | |
| Phone: | 1-800-528-8989 x4346 |
| Fax: | 616-356-1903 |
| Email: | limbcenter@maryfreebed.com |
| Website: | www.maryfreebed.com |
| UMHS Amputee Support Group | |
| Peer visitation, Activities and monthly amputee support group meeting | |
| 2850 S. Industrial Hwy Ste. 400 Ann Arbor, MI 48104 | |
| Phone: | 734-975-7449 |
| Fax: | |
| Email: | amputeesupportgroup@med.umich.edu |
| Website: | www.med.umich.edu/pmr/op/ |
| Lissencephaly | |
| The Lissencephaly Network, Inc. | |
| A national support network that provides bi-annual conferences, directory, newsletter, toy and equipment library; genetic counseling. | |
| c/o Diana Fitzgerald 10408 Bitterroot Ct. Fort Wayne, IN 46804 | |
| Phone: | (260) 432-4310 |
| Fax: | 219-432-4310 |
| Email: | lissencephalyone@aol.com |
| Website: | www.lissencephaly.org |
| Lung Disease | |
| American Lung Association of Midland States | |
| The mission of ALAM is the prevention of lung disease and the promotion of lung health. Services include year-round special events, air quality programs, asthma management, professional education services, smoking cessation programs, community health service programs and volunteer opportunities. Call for information on lung disorders and support groups throughout Michigan. | |
| 25900 Greenfield Ste 401 Oak Park, MI 48237 | |
| Phone: | 1-800-543-LUNG |
| Fax: | 248-784-2008 |
| Email: | |
| Website: | www.midlandlung.org |
| Lupus | |
| Lupus Alliance of America Michigan Indiana Affiliate | |
| Call for information on support groups or meetings in your area. | |
| 26507 Harper Ave. St. Clair Shores, MI 48081 | |
| Phone: | 1-800-705-6677 |
| Fax: | 586-775-8494 |
| Email: | info@milupus.org |
| Website: | www.milupus.org |
| Lymphedema | |
| Lymphedema Network of Northern Michigan | |
| Serves people of all ages with primary and secondary lymphedema. Works with Munson Medical Center to explore pathways to treatment and prevention. Periodic educational and networking meetings with invited speakers. Meets quaterly, January, April, June and September, the last Tuesday of the month. Call for times. Located at the Breast Health Center and available via REMEC. | |
| c/o Jane Rolf Breast Health Center 1105 6th St. Traverse City, MI 49684 | |
| Phone: | 1-866-443-0797 |
| Fax: | |
| Email: | mrolf1@mhc.net |
| Website: | www.mhc.net |
| Macular Degeneration | |
| Macular Degeneration Support Group | |
| Support Group for those with vision impairments, especially macular degeneration. Meets 2nd Thursday of month at 1pm. | |
| Eastern Branch Jackson District Library 3125 E. Michigan Ave. Jackson, MI 49202 | |
| Phone: | 788-4074 |
| Fax: | |
| Email: | |
| Website: | |
| Marfan Syndrome | |
| National Marfan Foundation - Detroit Network Group | |
| The Metro Detroit Marfan Network Group meetings held periodically. Please contact any of the individuals listed for more information and resources on Marfan Syndrome. Please find updated meeting announcement at the support services - local contact at National Marfan Foundation web site (http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_content_id=178&menu_item_id=91). | |
| c/o Li Li 8900 Jefferson Detroit, MI 48214 or c/o Kym Natzke 2501 Gerald Rochester Hills, Mi 48307 | |
| Phone: | 313-823-2609 |
| Fax: | |
| Email: | |
| Website: | www.marfan.org |
| Mental Illness | |
| Association for Children's Mental Health, Inc. | |
| ACMH provides advocacy and information to parents who are raisng children with mental health problems. Some MI communities have active support groups. ACMH is Michigan's Statewide Organization of the Federation of Families for Children's Mental Health. | |
| 100 W Washtenaw St., Suite 4 Lansing MI 48933-2129 | |
| Phone: | 517-372-4016 |
| Fax: | 517-372-4032 |
| Email: | acmhadmin@sbcglobal.net |
| Website: | www.acmh-mi.org |
| Mental Health Association in Michigan - Headquarters | |
| Provides information and referrals | |
| 30233 Southfield rd. Suite 220 Southfield, MI 48076 | |
| Phone: | 248-647-1711 |
| Fax: | 248-647-1732 |
| Email: | mhamich@aol.com |
| Website: | www.mha-mi.org |
| NAMI Metro | |
| P.O. Box 852, Northville, MI 48167 | |
| Phone: | 248-348-7197 |
| Fax: | |
| Email: | |
| Website: | namimetro.org |
| NAMI Michigan-National Alliance on Mental Illness | |
| Fifty-two groups statewide with affiliates in nearly every county. Our affiliates provide support groups for persons with mental illness and a support group for family members. We provide In Our Own Voice which has speakers for various groups on mental illness. Our affiliates provide educational programs for families of those who suffer from mental illness. On April 13-14th, 2008 a state conference will be held in Ann Arbor and on September, 28th 2008 the NAMI walk will be held at Bell Isle in Detroit. | |
| 921 N. Washington Lansing, Michigan 48906 | |
| Phone: | 1-800-331-4264 |
| Fax: | 517-485-2333 |
| Email: | namimichigan@acd.net |
| Website: | mi.nami.org/ |
| Metabolic Disorders | |
| FOD (Fatty Oxidation Disorders) Family Support Group | |
| The FOD (Fatty Oxidation Disorders) Family Support Group™ was 'born' in 1991 as a way of dealing with the sudden death of our 21-month old daughter, Kristen, in 1985 from undiagnosed MCAD. Initially, she was 'diagnosed' with Reye's Syndrome and it was not until one year later, when our son Kevin was born and diagnosed with MCAD that we discovered Kristen also had this rare metabolic disorder. Our third child Brian, is a carrier of MCAD and not directly affected. To say the least, our family has been changed forever by this genetic disorder. Our mission is clear...to connect and network with FOD Families and Professionals around the world and to provide emotional and grief support, Family Stories, practical information about living with these disorders, and Medical Updates to inform families of new developments in screening, diagnosis, research and treatment. | |
| PO Box 54 Okemos, MI 48805-0054 | |
| Phone: | 517-381-1940 |
| Fax: | 866-290-5206 |
| Email: | deb@fodsupport.org |
| Website: | www.fodsupport.org |
| MPS and Related Disease | |
| National MPS Society | |
| The National MPS Society is a non-profit organization whose mission is to find cures for MPS and related diseases, and to provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases. Mucopolysaccharidoses (MPS) are genetic diseases that cause cells to perform improperly, resulting in progressive damage throughout the body. The diseases are rarely apparent at birth, but the signs and symptoms develop with age as more cells become damaged. As the damaged cells accumulate in the body, the body shuts down, eventually leading to a premature death. At this time there is no cure. | |
| PO Box 14686, Durham, NC 27709-4686 | |
| Phone: | 919-806-0101 |
| Fax: | 919-806-2055 |
| Email: | info@mpssociety.org |
| Website: | www.mpssociety.org |
| Multiple Sclerosis | |
| National Multiple Sclerosis Society - Michigan Chapter, Inc. | |
| Our mission is to end the devastating effects of multiple sclerosis. We are dedicated to the prevention, treatment, and finding a cure for multiple sclerosis and to improving the quality of life for individuals with MS and their families. We offer programs and services in the areas of health and wellness, knowledge, and independence. We also provide a number of peer support programs. Call us today for more information! | |
| 21311 Civic Center Drive, Southfield, MI 48076 | |
| Phone: | 800-344-4867 |
| Fax: | 248-350-0029 |
| Email: | info@mig.nmss.org |
| Website: | www.nationalmssociety.org/mig |
| Muscular Dystrophy | |
| Muscular Dystrophy Adult Support Group | |
| An adult support group offered on the 2nd Tuesday of each month from 6-7:30 at the Macomb/Oakland Regional Center. For more information feel free to contact Denise at 586-274-9000. | |
| Macomb/Oakland Regional Center Inc. 16200 19 Mile rd. Clinton Township, MI | |
| Phone: | 586-274-9000 |
| Fax: | 313-745-0955 |
| Email: | sterlingheights@mdausa.org |
| Website: | www.mda.org |
| Muscular Dystrophy Association - Metro Detroit East | |
| 43329 Schoenherr Sterling Height, Mi 48313 | |
| Phone: | 586-274-9000 |
| Fax: | 586-274-9057 |
| Email: | 3881.office@mdausa.org |
| Website: | www.mdausa.org |
| Muscular Dystrophy Association - Metro Detroit North | |
| Serves individuals with neuromuscular disorders in Oakland County and part of Wayne County. Join us on MARCH 9th, 2008 at our 5th Annual "Great Walk to Stride-n-Ride!" Be a team captain or join a team and have fun as we take one step at a time to reach a cure! | |
| 36520 Grand River Ave Ste 102 Farmington Hills, MI 48335 | |
| Phone: | 248-474-0235 |
| Fax: | 248-474-0290 |
| Email: | msegal@mdausa.org |
| Website: | www.mdausa.org |
| Muscular Dystrophy Association - Metro Detroit West | |
| Serves individuals with neuromuscular disorders in Wayne and Monroe counties. | |
| 5860 Canton Center Rd. Ste 362 Canton, MI 48187 | |
| Phone: | 734-416-7076 |
| Fax: | 734-416-8089 |
| Email: | jcampbell@mdausa.org |
| Website: | www.mda.org |
| Muscular Dystrophy Association - South Central Michigan Chapter | |
| 2133 University Park Drive #400 Okemos,MI 48864 | |
| Phone: | 517-706-0348 |
| Fax: | 517-706-0376 |
| Email: | lansing@mdausa.org |
| Website: | www.mdausa.org |
| Muscular Dystrophy Association - West Michigan Chapter/Southwest Michigan | |
| Support Group meets on the 3rd Tuesday of the month from 7-9pm at the Wege Center Level 1 Room 12 at 300 Lafayette st in Grand Rapids | |
| 161 Ottawa Ave., Ste 305-A Grand Rapids, MI 49503 | |
| Phone: | 616-459-4331 |
| Fax: | 616-459-2506 |
| Email: | grandrapidsdistrict@mdausa.org |
| Website: | www.mdausa.org |
| Muscular Dystrophy Association of North Central Michigan | |
| Serves individuals with neuromuscular disorders in the Upper Peninsula and north central Michigan. | |
| 1605 Tittabawassee #3 Saginaw, MI 48604 | |
| Phone: | 989-771-9612 |
| Fax: | 989-771-9640 |
| Email: | saginaw@mdausa.org |
| Website: | www.mdausa.org |
| Myasthenia Gravis | |
| Myasthenia Gravis Association, Inc. | |
| Provides a comprehensive support system for people diagnosed with MG, a neuromuscular disease, and their families. Two location are available; one in Warren, MI at the Amazing Grace Luthern Church and another in Ann Arbor, MI at St. Joseph Mercy Hospital | |
| 17117 W 9 Mile Rd., Ste 1409 Southfield, MI 48075 | |
| Phone: | |
| Fax: | |
| Email: | |
| Website: | www.mgadetroit.org |
| Myasthenia Gravis Foundation - Great Lakes Chapter | |
| Publishes quarterly newsletter; holds periodic support group meetings; provides informational brochures on disease symptoms and treatment. | |
| 2680 Horizon Dr. SE Ste. C-9 Grand Rapids, MI 49546 | |
| Phone: | 616-956-0622 |
| Fax: | 616-956-9234 |
| Email: | info@myasthenia-mi.org |
| Website: | www.mg-mi.org |
| Neurofibromatosis | |
| Neurofibromatosis Support Group of West Michigan | |
| Provides information and support for individuals and families affected by neurofibromatosis. | |
| c/o Rosemary Anderson P.O. Box 6026 Grand Rapids, MI 49516-6026 | |
| Phone: | 616-451-3699 |
| Fax: | 616-391-5500 |
| Email: | nfwestmich@aol.com |
| Website: | www.nfsupport.org/ |
| Noonan Syndrome | |
| The Noonan Syndrome Support Group, Inc. | |
| Provides support and information for families. Access to literature for professionals and parents. National and regional conferences. Listserv available through Website. Parent information packet available by calling 1-888-686-2224. | |
| c/o Ann Yurcek (Parent Rep. for MI, IL, IN, WI, IA) 1246 Park Road Lancaster, WI 53813 | |
| Phone: | 269-779-6429 |
| Fax: | |
| Email: | anny458@aol.com |
| Website: | www.noonansyndrome.org |
| Osteogenesis Imperfecta | |
| Osteogenesis Imperfecta Foundation, Inc. | |
| The only national voluntary health agency dedicated to helping people cope with the problems associated with osteogenesis imperfecta. Provides research funding, education and support. Offers a quarterly newsletter and biannual national conference. | |
| 804 W. Diamond Ave. Gaithersburg, MD 20878 | |
| Phone: | 301-947-0083 |
| Fax: | 301-947-0456 |
| Email: | bonelink@oif.org |
| Website: | www.oif.org |
| Parkinson Disease | |
| Grand Traverse Area Parkinson's Support Group | |
| Two other support groups under the GTAParkinson's Support Groups Young Onset Parkinson's Support Group: 231-862-3234 Frankfort Support Group: 231-882-4865 | |
| 3535 W. South Airport Rd.,PO Box 5734, Traverse City, MI 49696-6255 Curent Address for Parkinson's Information: Grand Traverse Area Parkinson's Support Group 10049 East Grandview Court, Traverse City, MI 49684 | |
| Phone: | 231-947-1946 |
| Fax: | 231-947-1946 |
| Email: | mmeach@sbcglobal.net |
| Website: | www.gtaparkinsonsgroup.org |
| Michigan Parkinson Foundation | |
| Provides information and referral, education, research, medication assistance, day care, and neurologist referrals. Numerous support groups statewide. | |
| 30400 Telegraph Road, Suite 150 Bingham Farms, MI 48025 | |
| Phone: | 1-800-852-9781 |
| Fax: | 248-433-1150 |
| Email: | office@parkinsonsmi.org |
| Website: | www.parkinsonsmi.org |
| Polycystic Kidney Disease | |
| Polycystic Kidney Research Foundation - Michigan Friends | |
| Support Group meets once a month on the 2nd Wednesday at 6:30pm at the William Beaumont Administration Building in Royal Oak, MI. | |
| Kathy Glynn Detroit, MI | |
| Phone: | 1-248-761-9944 |
| Fax: | 313-273-9476 |
| Email: | |
| Website: | www.pkdcure.org/site/PageServer?pagename=pkdchp_chapter_detroit |
| Prader-Willi Syndrome | |
| Prader-Willi Syndrome Association of Michigan | |
| Please visit our website for current information. | |
| c/o Abe Anderson 10756 Woodbushe Lowell, MI 49331 | |
| Phone: | 616-566-3280 |
| Fax: | |
| Email: | mi@pwsausa.org |
| Website: | www.pwsausa.org/mi/ |
| Retinal Degenerative Diseases | |
| The Foundation Fighting Blindness - Michigan Affiliate | |
| Call for information foundation activities. | |
| 554 Old Perch Rd Rochester, MI 48309 | |
| Phone: | 313-438-3442 |
| Fax: | |
| Email: | |
| Website: | www.blindness.org/default.asp |
| Rett Syndrome | |
| International Rett Syndrome Foundation | |
| Lisa Rushin is the newly appointed representative for the state Michigan for the IRSF. Individual offices for IRSF can be found on the web site. | |
| Lisa Rushin Michigan Representative 906 N. Court Avenue Alma, MI 48801 | |
| Phone: | 989-463-3474 |
| Fax: | |
| Email: | siecam@aol.com |
| Website: | www.rettsyndrome.org |
| Scleroderma | |
| Scleroderma Foundation - Michigan Chapter | |
| support groups around the state. Please call for information. | |
| 30301 Northwestern Hwy. Ste. 300 Farmington Hills, MI 48334 | |
| Phone: | 248-865-7259 |
| Fax: | 248-865-7523 |
| Email: | |
| Website: | scleroderma.org/chapter/michigan |
| Short Stature | |
| Little People of America - Detroit Chapter | |
| LPA will provide proactive, medical, social, vocational and parental guidance to individuals with short stature and their families. | |
| Dee Dee Allemon, Chapter President 20217 Woodmont Harper Woods, MI 48225 | |
| Phone: | 313-882-3041 - Dee Dee Allemon |
| Fax: | |
| Email: | rrpsap@comcast.net |
| Website: | www.lpaonline.org |
| Little People of America - Parent Resource | |
| c/o Lenette Sawisch 3725 W Holmes Rd. Lansing, MI 48911 | |
| Phone: | 517-393-3116 |
| Fax: | |
| Email: | lenette@sawisch.com |
| Website: | |
| Shwachman-Diamond Syndrome | |
| Shwachman Diamond Syndrome Foundation | |
| Founded in 1994 by Joan Mowery, the mother of an SDS child, Shwachman-Diamond Syndrome Foundation is a national, nonprofit, patient advocacy organization. Our goals are to advocate and support research towards a cure and to improve medical management of symptoms, as well as to link families for emotional support and supply them with the most current medical information available. This information is provided with the expertise and cooperation of our professional medical advisory board. | |
| 127 Western Ave Sherborn, MA 01770 | |
| Phone: | 888-825-7373 |
| Fax: | 888-825-7373 |
| Email: | info@shwachman-diamond.org |
| Website: | shwachman-diamond.org |
| Shwachman-Diamond America | |
| Shwachman-Diamond America's Mission: *Fund and promote research in all aspects of SDS. *Disseminate current medical literature to families and physicians. *Help fund the biennial International Congress on SDS. *Facilitate the development of a medical management plan. *Promote parent education through a family support network. | |
| 931-B South Main St. #332 Kernersville, NC 27284 | |
| Phone: | 336-423-8158 |
| Fax: | |
| Email: | |
| Website: | www.shwachmandiamondamerica.org |
| Sickle Cell Anemia | |
| Sickle Cell Disease Association of America, Inc., - Michigan Chapter | |
| The Sickle Cell Disease Association of America (Michigan Chapter) provides a wide array of services for the community aimed at improving the lives of individuals that have sickle cell anemia or related condition. Programs and activities are designed to create greater awareness, to promote better understanding and knowledge of sickle cell disease, and to provide support/resources to individuals and families with sickle cell conditions. | |
| 18516 James Couzens Detroit, MI 48235-2507 | |
| Phone: | 313-864-4406 |
| Fax: | 313-864-9980 |
| Email: | conict7469@yahoo.com |
| Website: | www.sicklecelldisease.org |
| Sleep Disorders | |
| Consultants in Sleep and Pulmonary Medicine | |
| website will be opertaional March 2008 | |
| 28200 Franklin Rd. Southfield, MI 48034 | |
| Phone: | 248-350-2722 |
| Fax: | 248-350-0154 |
| Email: | |
| Website: | www.cspm.us |
| Smith-Lemli-Opitz Syndrome | |
| Smith-Lemli-Opitz Syndrome Advocacy Families in Michigan | |
| Provides information about the syndrome, local get-togethers and international conferences. | |
| c/o Mary Ann and Frank Spitale 6489 Lake Meadow Dr. Waterford, MI 48327 | |
| Phone: | 248-886-0150 |
| Fax: | |
| Email: | maspitale@hotmail.com |
| Website: | www.smithlemliopitz.org |
| Special Needs - General | |
| ARC Services of Macomb, Inc. | |
| An international self-advocacy and support group of people with developmental disabilities speaking for themselves. We are people first; disabilities come second. Call for information on numerous chapters statewide. | |
| ARC Services of Macomb Inc. 44050 Gratiot Clinton Township, MI 48036 | |
| Phone: | 586-469-1600 |
| Fax: | 586-469-2527 |
| Email: | |
| Website: | www.arcservices.org |
| disAbility Connections Inc. | |
| Provide services for children and adults with disabilities living in Jackson county. | |
| 409 Linden Ave. Jackson, MI 49203 | |
| Phone: | 517-782-6054 |
| Fax: | 517-782-3118 |
| Email: | monicam@disabilityconnect.org |
| Website: | www.disabilityconnect.org |
| Family Support Network | |
| Offers parent-to-parent support through local chapters led by trained parents across Michigan. Helps match parents of children with similar medical concerns. Chapter activities include fun special events and parent information meetings. | |
| Children's Special Health Care Services Michigan Department of Community Health Cadillac Place Ste 3-350 Detroit, MI 48202-6003 | |
| Phone: | 1-800-359-3722 |
| Fax: | |
| Email: | marinm@michigan.gov |
| Website: | |
| Michigan Alliance For Families | |
| Michigan Alliance for Families provides information, support and education to families of children and adults with disabilities from birth to age 26 who are in the educational system. The purpose of the project is to increase the involvement of families in their children's education and the educational system in general. The work of the Michigan Alliance is based on requirements of the Individuals with Disabilities Education Act (IDEA), and is a Mandated Activities Project Initiative funded by the Michigan Department of Education. Michigan Alliance is also Michigan's federally funded Parent-Training and Information Center and works in collaboration with the U.S. Department of Education, Office of Special Education Programs (OSEP). Resources include information, referrals, one-on-one support, information folders on disabilities and educational topics - all of which can be accessed through the toll-free line, web site, or e-mail. Michigan Alliance also provides trainings for families and professionals around the state. The Michigan Alliance staff are parents of individuals with disabilities who have first-hand experience with all aspects of the educational system. Staff are trained in listening, communicating, and problem-solving skills. We have 14 sites around the state served by local parent mentors who live in the community. Parent Mentors connect families with the resources they need, provide information and assistance, and mentor parents as needed. Counties not served by Parent Mentors are served by two Information & Referral Offices. | |
| Located at: The ARC Michigan 1325 South Washington Ave Lansing, MI 48910 | |
| Phone: | 800-552-4821 |
| Fax: | 517-487-0303 |
| Email: | info@michiganallianceforfamilies.org |
| Website: | www.michiganallianceforfamilies.org |
| MUMS Parent to Parent Network | |
| MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS' mission to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Through a database of over 21,000 families from 54 countries, covering over 3500 disorders, very rare syndromes or undiagnosed conditions can be matched. We have almost 800 Michigan families registered with MUMS so we are often able to match Michigan parents with others in their own state. Parents can then exchange valuable medical information, as well as, the names of doctors, clinics and medical resources or research programs. Families provide each other with emotional support and they don't have to feel so alone when they have each other to reach out to in time of need. MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match. MUMS also connects parents with support groups dealing with their child's specific disability or assists them in forming a group. The newsletters allow families to share and speak out about issues affecting their lives. (Annual subscription: $15 for Parents, $25 for professionals, Matching service is $5.00.) Hyperbaric Oxygen Therapy for Brain Damage Packet (310 pages) is $25 for USA, $35 for other countries (Visa and Mastercard accepted). If you cannot afford the subscription fee just let us know and we will provide newsletters and matching for free. For an updated list of HBO providers: http://www.netnet.net/mums/hbolistAK-FL.htm Visit: http://www.netnet.net/mums/HBO.htm for more information on Hyperbaric Oxygen Therapy and testimonials. | |
| 150 Custer Court Green Bay, WI 54301-1243 | |
| Phone: | 877-336-5333 |
| Fax: | 920-339-0995 |
| Email: | mums@netnet.net |
| Website: | www.netnet.net/mums/ |
| Parent to Parent of Southwest Michigan | |
| Provides parent to parent support to families of newly diagnosed children, information and resources as part of Parent to Parent of SW MI. | |
| 406 E. Michigan Kalamazoo, MI 49007 | |
| Phone: | 269-345-8950 |
| Fax: | 269-345-5363 |
| Email: | jayne@p2pswmi.org |
| Website: | www.p2pswmi.org |
| St. Louis Center | |
| St. Louis Center is a caring, residential, family living and learning environment providing for the physical, emotional, and spiritual needs of children and adults with developmental disabilities. | |
| 16195 Old US 12 Chelsea, MI 48118 | |
| Phone: | 734-475-8430 |
| Fax: | 734-475-0310 |
| Email: | mail@stlouiscenter.org |
| Website: | www.stlouiscenter.org |
| The ARC Michigan | |
| Many local chapters (33) statewide; call for the closest one or visit www.arcmi.org and reference the chapter locator for contact information for each chapter. ARC Michigan provides statewide advocacy for persons with developmental disabilities and their families; technical assistance for local chapters. | |
| 1325 S. Washington Ave. Lansing, MI 48910 | |
| Phone: | 800-292-7851 |
| Fax: | 517-487-0303 |
| Email: | |
| Website: | www.arcmi.org |
| The ARC of Midland | |
| Serves individuals with developmental disabilities and their families. Promotes the presence, participation and inclusion for people with developmental disabilities | |
| 220 W. Main St. Ste 101 Midland, MI 48640 | |
| Phone: | 989-631-4439 |
| Fax: | 989-832-5528 |
| Email: | arcadmin@thearcofmidland.org |
| Website: | www.thearcofmidland.org |
| Spina Bifida | |
| Myelomeningocele Care Center | |
| Provides comprehensive, coordinated specialty health care and supervision for children with myelomeningocele, spinal defects and injuries. We have an annual conference for parents and children with spina bifida. We work hard to network families of children with similar interests and abilities. A quarterly newsletter is published. | |
| Children's Hospital of Michigan 3901 Beaubien Blvd. Detroit, MI 48201 | |
| Phone: | 313-745-5226 |
| Fax: | 313-745-2405 |
| Email: | pbeierwa@dmc.org |
| Website: | |
| Spina Bifida Association of Upper Peninsula Michigan | |
| Provides support and information to families with spina bifida. Affiliated with National Spina Bifida Association. | |
| c/o Lois Bengson 1220 N. 3rd St. Ishpeming, MI 49849 | |
| Phone: | 906-485-5127 |
| Fax: | |
| Email: | cbengson@chartermi.net |
| Website: | www.sbaa.org |
| Torticollis | |
| National Spasmodic Torticollis Association - Southeast Michigan Chapter | |
| Support groups are available in Grand Rapids, South Haven, Huntington Woods, and Ann Arbor. For more information contact the NSTA. | |
| 9920 Talbert Avenue Fountain Valley, CA 92708 | |
| Phone: | 1-800-487-8385 |
| Fax: | |
| Email: | NSTAmail@aol.com |
| Website: | www.torticollis.org |
| Tourette Syndrome | |
| Tourette Syndrome Association - Michigan Chapter | |
| Groups for children with Tourette syndrome and for parents of children with Tourette syndrome. Meet second Friday of the month on a Bi-monthly basis. Please check the website for more information. Affiliated with National. We meet at St. John's Oakland at 27351 Dequindre Road, Madison Heights, MI 48071 in the Doctors Education Center. Enter the hospital in the south driveway. | |
| Barbara Schmatz 30641 Whittier Madison Heights, MI 48071 | |
| Phone: | 248-641-8725 |
| Fax: | |
| Email: | tsamichigan@comcast.net |
| Website: | www.tsa-michigan.org |
| Trisomy 18/13 and Related Disorders | |
| Support Organization For Trisomy 18, 13 and related disorders | |
| For information on reading material or to be connected with other families with similiar syndromes contact Barb VanHerreweghe at 1-800-716-SOFT. For information on the local chapter contact Freda Branch at 269-649-1730. | |
| Freda Branch 108 N. Kalamazoo Avenue Vicksburg, MI 49097 | |
| Phone: | (269) 649-1730 |
| Fax: | |
| Email: | fabranch@earthlink.net |
| Website: | www.trisomy.org |
| Trisomy 9p and Related Disorders | |
| 9 Trisomy International Parent Support | |
| This is a listserve for families who are affected by trisomy 9 syndrome. | |
| Freda Branch, Michigan contact person 9tips 108 N. Kalamazoo St. Vicksburg, MI 49097-1205 | |
| Phone: | 269-649-1730 |
| Fax: | |
| Email: | 9tips@yahoogroups.com |
| Website: | |
| Trisomy 9p Parent Support | |
| There is now a listserve for Tri 9 parents. Please send E mail to Alice Todd for further information. | |
| c/o Children's Hospital of Michigan Division of Genetics and Metabolism 3901 Beaubien Blvd. Detroit, MI 48201 | |
| Phone: | (909) 862-4470 |
| Fax: | |
| Email: | atoddna@sprynet.com |
| Website: | |
| Tuberous Sclerosis | |
| National Tuberous Sclerosis Association | |
| Although no meetings are currently being held, Donna is available for contact. | |
| Donna Bletch 15996 14 Mile Rd. Fraser, MI 48026 | |
| Phone: | 586-294-8725 |
| Fax: | |
| Email: | edblet@yahoo.com |
| Website: | |
| Turner Syndrome | |
| Southeastern Michigan Turner Syndrome Society | |
| Provides support and chance to meet other people who have Turner Syndrome and their families. Affiliated with the Turner's Syndrome Society of the United states. | |
| c/o Kim Semrau 146 Meadow Lane Circle Rochester Hills, MI 48307 | |
| Phone: | 248-608-6127 |
| Fax: | |
| Email: | ksemrau@aol.com |
| Website: | www.turnersyndrome.org/ |
| West Michigan Turner Syndrome Sosciety | |
| 652 Macomb Ave. NW Grand Rapids, MI 49534 | |
| Phone: | 616-450-6915 |
| Fax: | |
| Email: | |
| Website: | |
| Undiagnosed | |
| Syndromes Without A Name USA | |
| We support families of children who have undiagnosed medical conditions. | |
| 1745 Lorna Lane Otsego, MI 49078 | |
| Phone: | 269 692 2090 |
| Fax: | |
| Email: | amyclugston@undiagnosed-usa.org |
| Website: | www.undiagnosed-usa.org |
| Velo-Cardio-Facial Syndrome | |
| 22Q/VCFS/DiGeorge Syndrome Support Group of Michigan | |
| a southeast michigan based support group that meets the first tues of every other month. a group of families, supporting eachother and our children with VCFS. a great resource for parents. you will feel so welcome here!!!! | |
| 200 Woodslee DriveDrive,Troy, Michigan 48083 | |
| Phone: | 248-740-4742 |
| Fax: | |
| Email: | jlew@wowway.com |
| Website: | |
| VCFS Family Support | |
| On-line support group that offers wonderful support to families and members with VCFS/DiGeorge Syndrome. Also, I am a parent to two children with DiGeorge Syndrome & autism. | |
| Petersburg, Michigan | |
| Phone: | (734) 708-3603 |
| Fax: | |
| Email: | DiGeorge02@yahoo.com |
| Website: | health.groups.yahoo.com/group/vcfsfamilysupport/ |
| Vision Impairment | |
| Blind Children's Fund | |
| Collects, develops, and disseminates information, materials and services for blind and visually impaired children, their families and professionals who work with them. Newsletters, books, videos and augmentative services (both low tech and computer supported) for sale. | |
| 201 S. University Dr. Mt. Pleasant, MI 48858 | |
| Phone: | 989-779-9966 |
| Fax: | 989-779-0015 |
| Email: | bcf@blindchildrensfund.org |
| Website: | www.blindchildrensfund.org |
| Downriver Association for the Blind and Visually Impaired, Inc. | |
| A mid-day support group, open to all ages of persons with visual impairment in the Downriver area of Wayne County. Meets Sept. thru June on the second Thursday monthly at the Knights of Columbus Jones Council in Lincoln Park,MI. No fees or dues apply. | |
| Lincoln Park, MI | |
| Phone: | 313-382-7974 |
| Fax: | |
| Email: | |
| Website: | |
| Greater Detroit Agency for the Blind and Visually Impaired | |
| Serves legally blind adults over age 60 in seven-county area of southeast Michigan by teaching new skills allowing them to lead independent lives. Also provides literature on eye health and safety, visual impairments and eye disorders; Provides speakers & information to schools, senior centers & individuals. Provides support and encouragement to families of visually impaired children. Conducts 2 two-week children's summer enrichment day camps as well as short sports programs. | |
| 16625 Grand River Ave. Detroit, MI 48227 | |
| Phone: | 313-272-3900 |
| Fax: | 313-272-6893 |
| Email: | information@gdabvi.org |
| Website: | www.gdabvi.org/index.html |
| National Federation of the Blind of Michigan | |
| Call for information on local chapters and parent organizations. Provides advocacy, works on legislation, and distributes literature to educate the public. Monthly meetings. | |
| 1212 N. Foster Lansing, MI 48912 | |
| Phone: | 517-485-0326 |
| Fax: | |
| Email: | f.wurtzel@comcast.net |
| Website: | www.nfbmi.org |
| Visually Impaired Persons for Progress | |
| Consumer organization of blind and visually impaired persons. Serves all ages. Meets second Tuesday of September, November, January, March April and May at The Grand Villa Restaurant: 3594 Chicago Drive Grandville, MI. Affiliated with the American Council of the Blind. | |
| 2426 Thornwood SW Wyoming, MI 49509 | |
| Phone: | 616-235-8189 |
| Fax: | |
| Email: | |
| Website: | |
| Visually Impaired Support Group Visionaries | |
| Meets on the first Wed. of the month from 6-7:30 Sept-June. | |
| c/o The Detroit Institute of Ophthalmology 15415 East Jefferson Grosse Pointe Park, MI 48230 | |
| Phone: | 313-824-4710 Judi Dara or Nancy Pilorget |
| Fax: | 313-822-4233 |
| Email: | |
| Website: | www.eyeson.org |
| Von Hippel-Lindau Syndrome | |
| VHL Family Alliance - Michigan Chapter | |
| The VHLFA provides support and information on von Hippel-Lindau Syndrome to patients, families and physicians. We foster research and establish standards for clinical care centers nationally and internationally. We have numerous publications and hold local meetings as well as national conferences and international symposiums. | |
| c/o Frances Mott 4643 Vincent Dr. Holly, MI 48442 | |
| Phone: | 248-887-8617 |
| Fax: | |
| Email: | us-mi@vhl.org |
| Website: | www.vhl.org |
| Williams Syndrome | |
| Williams Syndrome Association | |
| Services include newsletter, regional conferences, social events, resource library, and national conventions. Special music camps for individuals with Williams Syndrome. | |
| 570 Kirts Blvd Ste 223 Troy, MI 48084 | |
| Phone: | 248-244-2229 |
| Fax: | 248-244-2230 |
| Email: | info@williams-syndrome.org |
| Website: | www.williams-syndrome.org |
| Wolf-Hirschhorn (4p-) Syndrome | |
| 4p-Support Group | |
| Wolf-Hirschhorn Syndrome (Deletion 4p)- A guidebook for families of children is available from Meyer Rehabilitation Institute University of Nebraska Medical Center 600 S 42nd St. Omaha, NE 68198-5450 National Newsletter - email Sharon York syork@scattercreek.com Listserv, Send request message to fourpminus@4p-supportgroup.org | |
| c/o Christine Kleimola 1109 Sherman Ypsilanti, MI 48197 | |
| Phone: | |
| Fax: | |
| Email: | |
| Website: | www.4p-supportgroup.org |