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This is an advocacy and resource web site about living with Duchenne Muscular Dystrophy (DMD), a neuromuscular disease that slowly deteriorates muscle. This web site is about life. Too often parents of children with DMD are told that their children will die young and have relatively little quality of life, we are here to emphasize that that is not true. People with DMD can live happy, healthy and fulfilling lives. This website focuses on three areas, Prolonged Survival (living beyond the teenage years), Daily Living (doing what others take for granted) and Quality of Life (enjoying life like everyone should).
We hope you enjoy your visit and that you learn something. Please consider joining the DMD Pioneers Forum while the web site is being developed. For more information about DMD Pioneers, please see About DMD Pioneers.
 Featured Items
Pioneer Pointers: Attendant and Nursing Care
This month we are launching a brand-new feature here at DMD Pioneers, called Pioneer Pointers. This is an opportunity for DMD Pioneers to share their experiences with those affected by DMD. Every month we will feature answers to a different question, this month's edition focuses on attendant and nursing care. Our goal is to share personal experiences in hopes of providing some insight and information to everyone. Click here to read Pioneer Pointers: Attendant and Nursing Care.
WEBSITE UPDATE: New Front Page Layout!
The front page of DMD Pioneers has been reconfigured. Featured Items will focus on web site updates and new information about DMD Pioneers. DMD Updates will feature news items and research updates of interest to people with DMD. Hopefully, these changes will help us to better provide information to you.
DMD Pioneer Featured in MDA Quest Magazine
One of our own members, Scott Bennett, was published in the September/October 2004 edition of the Muscular Dystrophy Association's Quest Magazine. Scott's article, "From Where I Sit: What to Tell the Children," provides insight for parents who are struggling with how to explain a child's DMD to him. The article focuses on being positive and not dwelling on statistics and doctor prognostications. It is a worthwhile read and we are happy to share it with you.
Chat Schedule
Living With DMD Chat
3rd Wednesday at 5 PM Eastern (4 Central, 3 Mountain, 2 Pacific)
DMD Pioneers Mailing List Chat
Sundays at 3 PM Eastern (2 Central, 1 Mountain, 12 Pacific)
For information visit the DMD Pioneer Chat Page. |
DMD Updates
Columbia University DMD/BMD Project Update, Winter 2005
This update provides new information regarding the Columbia University research project, "Cognitive Skills in Boys with Muscular Dystrophy," under the direction of Dr. Veronica Hinton. Click here for the DMD/DMD Project Update.
PPMD Announces 2005 Legislative Conference
Parent Project Muscular Dystrophy has announced plans for their annual legislative conference, to be held March 6-8 in Washington DC. The annual conference allows parents to learn advocacy strategies and to meet with their Senators and Representatives to discuss the need for government spending on DMD research.
Quality of Life with MD Study Closed to New Participants
 The quality of life study will focus on people who have Becker, Duchenne, facioscapulohumeral or myotonic muscular dystrophy. MEDTAP International will be collecting information on the impact on quality of life of these muscular dystrophies. For information check out the MDA Research Press Release.
Previous Updates |
