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

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


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/


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.

17250 West 12 Mile Rd. Ste 102
Southfield, MI 48076

Phone: 888-444-0333
Fax: 248-557-8768
Email: aafamich@sbcglobal.net
Website: 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.

7058 Rolling Hills Drive
Waterford, MI 48327

Phone: 248-363-1123
Fax:
Email: cofafdetroit@yahoo.com
Website: www.geocities.com/cofafdetroit/home.html

Alopecia

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 - Northwest 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: alzgmc.org


Alzheimer's Association East Central Region
support groups, autopsy referrals, telephone helpline, education and training, safe return, respite assistance. 24/7 assistance by calling our toll free number

G-3287 Beecher Road
Flint, MI 48503

Phone: 800-337-3827
Fax: 810-720-3040
Email:
Website: alzgmc.org


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, in-home respite, 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.alzgmc.org


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
New ALS Support Group will begin Monday March 3 from 6:30-8:00pm at the Taubman Center in the DeJong library. For more information contact Janet Connely at 734-936-6265

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 assist people with ALS to live as independently 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.

21311 Civic Center Dr. Ste 200
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: Lmasserang@alsa-michigan.org
Website: www.alsa-michigan.org

Angelman Syndrome

Angelman Syndrome Support Group of Michigan
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:
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.

17117 W Nine Mi Rd., Ste 950
Southfield, MI 48075-4508

Phone: 800-968-3030
Fax: 248-424-9005
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

Asthma

American Lung Assoc of Midland States
The mission of ALAM is the conquest of lung disease and the promotion of lung health. ALAM's #1 priority is the prevention of lung disease; that is, to preclude the development of disease. Services include year round special events, air quality programs, professional education services, smoking cessation programs, community health service programs and volunteer opportunities. For a list of support groups in your area please visit: http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=38078 for further information

25900 Greenfield Ste 401
Oak Park, MI 48237

Phone: 1-800-LUNG-USA
Fax: 248-784-2008
Email:
Website: www.alam.org


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.

17250 West 12 Mile Rd. Ste 102
Southfield, MI 48076

Phone: 888-444-0333
Fax: 248-557-8768
Email: aafamich@sbcglobal.net
Website: aafamich.org

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 September through May.

P.O. Box 806086
St. Clair Shores, MI 48081

Phone: 586-447-2845
Fax:
Email:
Website:


Children and Adults with Attention Deficit/Hyperactivity Disorder of Grand Rapids
Support groups are available for parents, teens and adults with AD/HD. Parent support groups are held on the 3rd Tuesday of the month at St. Luke's Lutheran Church on the corner of 4 mile and East Beltline rd. at 3215 4 mile from 7-9pm. The teen support group is also held on the 3rd Tuesday at St. Luke's Lutheran Church from 7-9pm. The adult support group is on the 1st Tuesday 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 anyone who is interested. Starting Feb. 28th a parenting class for parents raising children with AD/HD will begin at the Kent Education Center-Mayfield Middle School. There is a $145 charge for non-members and $100 for members. However, funding is available for those in need. Topics covered include AD/HD misunderstandings, parenting strategies, and how to help your child succeed. For more information call: 616-874-5662

7269 De Costa NE
Rockford, MI 49341

Phone: 616-874-5662
Fax:
Email: LindaBrauer@charter.net
Website: www.chadd.org

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


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

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 Biploar Support Alliance of Kalamazoo
Meetings are the first three Mondays of the month 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 Support Alliance of Jackson and Hillsdale
Meets every Thursday from 7-8pm at Community Connections at 1200 N. West Ave in Jackson. 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:


Depression and Bipolar Support Alliance of Metro Detroit

PO Box 32531
Detroit, MI 48232-0531

Phone: 313-532-1348
Fax: 734-324-7056
Email: dbsadetroit@yahoo.com
Website: www.dbsa-metrodetroit.org/

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.

1755 Abbey Rd.
East Lansing, MI 48823

Phone: 1-800-227-2345
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: brittain@karmanos.org
Website: www.karmanos.org


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 support groups and programs. Contact Jennifer Gillette for more information.

22301 Foster Winter Drive, 3rd Floor
Southfield, MI 48075

Phone: 248-849-3243
Fax:
Email: jennifer.gillette@providence-stjohnhealth.org
Website: www.realmedicine.org/ProvidenceCancer/


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 a caregiver group or mixed diagnosis group. We have five disease specific groups running currently including gynecological cancer, gastro-intestinal cancer, skin cancer, breast cancer and lung cancer groups. 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

CFC Family Network
Provides information and support to families affected by CFC. Please visit the website for more information.

N/A

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 five times a year. For more information contact Pat Adams at 989-743-3990

c/o Nyla Wilson
11029 Phyllis Dr.
Clio, MI 48420

Phone: 810-686-2539
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., West Michigan 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 at7:00 at Kent Community Hospital, 750 Fuller NE, Grand Rapids, Main Floor- Meeting Room.

c/o Mitzi Berkhout
753 Parkway Dr., NE
Grand Rapids, MI 49525

Phone: 616-363-5749
Fax:
Email: hennmitz@aol.com
Website: www.csaceliacs.org


Celiac Sprue Association/USA Inc.,Michigan Capital Celiacs/DH Chapter
Monthly meetings include recipe ideas and other topics of interest to members. Also, visit our local website at http://micapitalceliacs.atspace.com/ and our Cel-Kids website at http://health.groups.yahoo.com/group/cel-kids/

1815 Sandhill Rd Mason MI 48854

Phone: 517-485-6288
Fax:
Email: dewolfn@voyager.net
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: health.groups.yahoo.com/group/glutenfreeannarbor/


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. Provides new member packet, newsletter, referral information, food fair, and research walk. Meets monthly September through May.

Mary Guerriero
26412 Warrington
Dearborn Heights, MI 48127

Phone: 313-274-9232
Fax:
Email: mcguerr@hotmail.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:

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:
Email: office@chromosome18.org
Website: www.chromosome18.org


Trisomy 18/13 Support
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.

Trisomy 18/13 Support
Freda Branch
108 N. Kalamazoo Avenue
Vicksburg, MI 49097


Phone: (269) 649-1730
Fax:
Email: fabranch@earthlink.net
Website: www.trisomy.org


Trisomy 9p Parent Support
There is now a listserve for Tri 9 parents. Please send an E-mail to Alice Todd for more 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: atodnna@sprynet.com
Website:

Colitis

Crohn's and Colitis Foundation of America, Inc. Michigan Chapter
Services include support group meetings, educational services, quarterly newsletter and brochures, educational meetings, and fundraising for research and education.

31313 Northwestern Hwy., Ste 209
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 D1225, Box 5718
1500 East Medical Ctr Dr.
Ann Arbor, MI 48109-0718

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
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 Center
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: ccwelsch@umich.edu
Website: www.cff.org


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., Michigan Chapter
Provides support and education. International family medical conference held annually. Local contacts in Michigan are available on the website.

604 Vernon Street
Oakland, CA 94610

Phone:
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 Biploar Support Alliance of Kalamazoo
Meetings are the first three Mondays of the month 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 Support Alliance of Jackson and Hillsdale
Meets every Thursday from 7-8pm at Community Connections at 1200 N. West Ave in Jackson. 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:


Depression and Bipolar Support Alliance of Metro Detroit

PO Box 32531
Detroit, MI 48232-0531

Phone: 313-532-1348
Fax: 734-324-7056
Email: dbsadetroit@yahoo.com
Website: www.dbsa-metrodetroit.org/


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

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: arcservices@arcservices.org
Website: www.arcservices.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/


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 (49) 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: 1-800-292-7851
Fax: 517-487-0303
Email:
Website: www.arcmi.org


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
Bingham Farms, Mi 48025-4508

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. Our support group is for parents and children with diabetes. A speaker presents on a special topic and then the parents break off into groups based upon the age of their children. Concerns for a 3 year old are very different than the concerns for an 18 year old. The children then remain with a diabetic educator and talk amongst themselves and/or do a craft project.

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


UP Diabetes Outreach Network
We meet monthly January through May and September through November. Call to find out date, time and location. Contact Paula at 906-387-4110 ext. 141

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: 517-347-6701
Fax:
Email: lansingdownsyndrome@yahoo.com
Website: www.lansingdownsyndrome.org


Down Syndrom Guild of Southeast Michigan
A nonprofit family support group serving Macomb, Oakland and Wayne Counties. Monthly support meetings (second Tuesday), newsletter, playgroup family activities, speakers, hospital visits, new member packet. Parent Contacts:248-646-0819

P.O. Box 522
Royal Oak, MI 48066-0522

Phone: 248-250-1297
Fax: 248-594-9658
Email: president@dsgsemi.org
Website: dsgsemi.org


Down Syndrome Association of Northwest Michigan
Contact Carrie at 231-922-0945 for further information.

P.O. Box 1451
Traverse City, MI 49685-1451

Phone: 231-922-0945
Fax:
Email:
Website:


Down Syndrome Association of West Michigan
We are a support and advocacy group. We provide information and materials, new parent resource packets, teacher packets, monthly newsletters, an extensive resource library, conferences and workshops.

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:


Parent to Parent of SW MI
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 Ave
Kalamazoo, MI 49007

Phone: 269-345-8950
Fax: 269-345-5363
Email: jayne@p2pswmi.org
Website: www.p2pswmi.org


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 monthly at St. Clair County Community Mental Health Building, 1011 Military Street, Port Huron, 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


International Dyslexia Association - Michigan Branch
The Institute is a non-profit, educational organization serving children and adults with dyslexia.

983 Spaulding Ave SE
Ada, MI 49301

Phone: 616-717-2984
Fax:
Email: postmaster@idamib.org
Website: www.idamib.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 and scroll down to find the magnifying glass that says "Find your nearest meeting" click 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

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:


Macomb County Fetal Alcohol Resource Education & Support Coalition
MCFARES offers a monthly support group for families raising individuals with FASD. Meetings are held the second Monday of the month from 6:30 - 8:30 pm at CARE, 31900 Utica Road, Fraser. There is no fee. Resources and speakers pertaining to life with FASD are routinely scheduled.

c/o CARE
31900 Utica Road
Fraser, MI 48026

Phone: 586-541-0033
Fax: 586-541-0034
Email:
Website: www.careofmacomb.com/MCFARES.html


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:

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.fragilex.org/html/michigan.htm


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

Phone: 269-629-5890
Fax:
Email: compose12@mei.net
Website: www.fraxa.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 “Pathways for Parenting,” a parenting program for parents who are deaf with hearing children; as well as support for those who are HIV positive, youth programs, summer camps, sign language interpreting, and a newsletter. Contact Mary 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. Teen Options, crisis intervention, employment/job coaching, 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.

220 Bagley, Ste 600
Detroit, MI 48226

Phone: 313-961-8120
Fax: 313-279-0550
Email: deafoptions@msn.com
Website: www.deafoptions.com


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.

1102 Mackin Rd.
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: 866-595-5585
Fax: 734-763-7802
Email: marykane@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

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:

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 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.

3901 Beaubien
Detroit, MI. 48201

Phone: 313-993-0382
Fax: 313-745-5437
Email: dmerritt@dmc.org
Website:


MSU Bleeding and Clotting Disorder Clinic
Treatment center for genetic 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: