Sibling Support Project (206) 297-6368 www.siblingsupport.org The national program for siblings of people with special needs conducts workshops, or “sibshops,” for adults and children, and offers listservs.

National Dissemination Center
for Children With Disabilities
(800) 695-0285
www.nichcy.org

Protected Tomorrows Network www.protectedtomorrows.com (847) 522-8086

Find What You
Need to Know
About ...

Through the Looking Glass (800) 644-2666 www.lookingglass.org TLG serves as a national resource center and network for parents with disabilities.

Support for Families of
Children With Disabilities
(415) 282-7494
www.supportforfamilies.org

Organizations Beach Center on Disability (785) 864-7600 Families & www.beachcenter.org CaringBridge Pa_renting (651) 452-7940 www.caringbridge.org

Technical Assistance Alliance for
Parent Centers
(888) 248-0822
www.taalliance.org/centers

Yahoo Health Chat Groups health.groups.yahoo.com (search “ muscular dystrophy”)

This list provides a good starting point in the search for information and answers about parenting and other topics in families affected by neuromuscular diseases.

Start your search with MDA’s booklet “Learning to Live With Neuromuscular Disease: A Message for Parents.” Copies in English and Spanish are available through your local MDA office.

For past Quest articles on related topics, see www.mda.org/publications/Quest/ topics_family.html.

Family Caregiver Alliance (800) 445-8106 www.caregiver.org

Books

Books can be ordered through your local
library or bookstore, or online.
Family Caregiving 101

www.familycaregiving101.org

Bigger Than the Sky: Disabled Women on Parenting, edited by Michele Wates and Rowen Jade, 1999, The Women’s Press.

Family Center on Technology
and Disability
(202) 884-8068
www.fctd.info
Breakthrough Parenting for Children With
Special Needs: Raising the Bar of Expec-
tations, by Judy Winter, 2006, Jossey-Bass.
Family Resource Center on Disabilities
(312) 939-3513
www.frcd.org

Building a Joyful Life With Your Child Who Has Special Needs, by Nancy J. Whiteman and Linda Roan-Yager, 2007, Jessica Kingsley Publishers.

Top Five Family Resources Family Voices (888) 835-5669 www.familyvoices.org This national network of families, friends and advocates supports family-centered, community-based health care services for children and youth with special needs.

Family Village Regional
Parent-to-Parent Programs
www.familyvillage.wisc.edu/Cof_p2p.
htm

Changed by a Child: Companion Notes for
Parents of a Child With a Disability, by
Barbara Gill, 1998, Doubleday.
More Than a Mom: Living a Full and
Balanced Life When Your Child Has
Special Needs, by Amy Baskin and Heather
Fawcett, 2006, Woodbine House.

National Family Caregivers Association (800) 896-3650 www.nfcacares.org NFCA educates, supports and speaks for the more than 50 million Americans who care for loved ones with disabilities or chronic conditions.

The Parent to Parent Handbook: Connecting Families of Children With Special Needs, by Betsy Santelli, Florene Stewart Poyadue and Jane Leora Young, 2001, Paul H. Brookes Publishing.

 

Parents With Disabilities Online www.disabledparents.net Home of the Parent Empowerment Network, an e-mail community of parents with disabilities, the site offers resources and stories contributed by parents with disabilities.

MUMS National
Parent-to-Parent Network
(877) 336-5333
www.netnet.net/mums

Raising a Child With a Neuromuscular Disorder: A Guide for Parents, Grandparents, Friends & Professionals, by Charlotte E. Thompson, M.D., 1999, Oxford University Press.