The publication Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy has been discontinued and is no longer available through this site. Please check out the following resources:
Publications
Learning to Live with Neuromuscular Disease: A Message to Parents (English / Spanish)
A Teacher’s Guide to Neuromuscular Disease (English / Spanish)
Hey, I’m Here, Too! (sibling support) (English / Spanish)
Online Resources
myMDA (registration required)
MDA’s social networking site. Post your questions on the message boards, or connect with other registered users via communities geared toward your interests.
myMuscleTeam
MDA's site mda.org/muscleteam helps individuals and caregivers recruit and coordinate in-home help.
Quest articles
- Therapeutic Touch: A Caring Touch Can Work Wonders, July-September 2009
- 504 Plans: What Parents Should Know, April-June 2009
- Exercising with a Muscle Disease (special package), April-June 2009
- Are Power Chair Sports Really Exercise? April-June 2009
- Stand Up! The Benefits of Standers for Children, January-March 2009
- Crucial Conversations: Tough Talks Demand Special Skills, November-December 2008
- The Genie’s Out of the Bottle: Genetic testing in the 21st century, November-December 2008
- Kid Quest: Get Your Game On! (Safely) (Internet safety), September-October 2008
- The Brain in MMD, September-October 2008
- Parents Beat Back Burnout, July-August 2008
- Doctors, Parents and Kids: Achieving an Effective Partnership, May-June 2008
- Moving Out: Operation Get a Life, May-June 2008
- Moving Out: Parents Seek New Options for Their Adult Children, May-June 2008
- How to Get Your Child’s School to Provide Assistive Technology or Help with Learning Disabilities, March-April 2008
- Parenting: Moving and Making New Friends, January-February 2008
- The College Game, July-August 2007
- When a Child is Grieving, July-August 2007
- Not Always Smooth Sailing: Charting a Corticosteroid Course, May-June 2007
- Service Dogs and Kids: Making it Work, May-June 2007
- Building the IEP Puzzle, March-April 2007
- Checking it Out When You’re Checking In (hospital stays), March-April 2007
- Figuring out Special Needs Trusts, November-December 2006
- Special Needs Trust Q&A, Quest Extra, November-December 2006
- Kids @ Play (accessible playgrounds), November-December 2006
- Watch Your Toes: Making Toddlers Safe Behind the Wheel, July-August 2006
- The Big Listen: Helping Kids Understand Their Diagnoses, July-August 2006
- Parenting: Find a Sitter, Catch a Break, May-June 2006
- Parenting: Keeping Kids Busy in the Summer, May-June 2006
- Revising Cardiac Care in Muscular Dystrophies, March-April 2006
- Children and Chores, May-June 2005
- With a Little Help From Your Friends (MDA support groups for teens), May-June 2005
- Beating the Bully Problem, March-April 2005
- Raising Teens: Is It Different for Parents with Disabilities? January-February 2005
- Parent-Caregivers: Learning to Let Go, November-December 2004
- Creative Pathways (Book excerpt: What parents of children with disabilities should know.), May-June 2004
- The Other Children in the Family, January-February 2004
- When Family Doesn’t Understand, April 2002
- Family Matters: Going It Alone (single mothers of children with DMD), October 2000
- The Brain in Duchenne Dystrophy (DMD), January 1997
From Where I Sit
Personal stories written by family members and/or individuals with MD and related muscle diseases.
Teens share their thoughts on the importance of having a supportive social network.
|
