The publication Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy has been discontinued and is no longer available through this site.
In 2010, MDA will release a new publication for parents of children with muscle diseases. In the meantime, 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.
Quest articles
- Hug Me: 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
- Kid Quest: 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! (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: Adult Children, May-June 2008
- IEP’s and Assistive Technology: Getting Schools to Ante Up, 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
- Let the Beat Go On: 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
- Creative Pathways (Book excerpt: What parents of children with disabilities should know.), May-June 2004
- The Other Children in the Family, January-February 2004
- 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.
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