Duchenne Muscular Dystrophy
- A progressive muscle disorder that affects only boys
- The number one genetic killer in the world
- Causes the loss of both muscle function and independence
- Most common of the over 30 diseases of the muscles
- Nearly all boys with DMD die by the age of 20
- A boy inherits DMD when he receives an X chromosome that fails to make the protein dystrophin, an essential building block of healthy muscle
- Approximately 20,000 children worldwide, or one in every 3,500 boys, are born with DMD
- Boys with DMD show signs of muscle weakness as early as age 3.
- Walking, running, or riding a bike is a challenge for a boy with DMD, as the disease gradually weakens the skeletal or voluntary muscles in the arms, legs and trunk
- Nearly all boys with DMD lose the ability to walk sometime between ages 8 and 12 and require full-time use of a wheelchair
- By the early teens or even earlier, the disease may also affect the boy’s heart and respiratory muscles
- Accepted treatments, such as a steroid regimen can only lessen symptoms and improve the quality of life
- Steroid regimens wreak havoc on these boys’ bodies
- The only significant breakthrough in DMD research was the discovery of the defective gene causing DMD – dystrophin – in 1986 at the Children’s Hospital in Boston, MA
- In the 20 plus years since that discovery there is nothing to stop or reverse the muscle degeneration of DMD.
Check out this amazing opportunity here: JB’s Keys to DMD
Dear NEDS Staff,
I would like to express my sincere gratitude to all of the instructors who worked with me over the past weekend. I was there for the MS event Saturday and stayed for Sunday. Honestly, I did not want to leave! A special thanks to Todd Clark and Jenny Quinn who were with me both days. They were so helpful and amazing. Jenny is going to do great as an OT, and Owen Anketell who hung out giving me tips all day Sunday is an impressive young man with a bright future. Also, thanks to Sarah, Brian, and Ed for their input. I had a weekend filled with joy and laughter thanks to all of you. I can’t wait to come back for more! Thanks for helping me to be completely joyous while skiing again. Wooohooo!
We are very pleased to announce that our NEDS education continues to grow by several volunteer coaches & staff. Please help us congratulate the following coaches & staff members who have obtained PSIA/AASI certifications during the 2016 – 2017 season.
VI/DD Adaptive Level 1
Mono-Bi Adaptive Level 1
Children’s Specialist 1 Certification
Snowboard Adaptive Level 2
Each year NEDS continues to grow their pool of certified coaches, which furthers the education and knowledge brought to lessons at NEDS every day. We thank our coaches for their commitment and desire to improve their skill sets, which make New England Disabled Sports one of the premier adaptive sports programs in the country.
Note to Coaches: If anyone took other parts of exams or educational certifications that the staff has not acknowledged, please let us know. Congratulations to you as well!
We would also like to thank our dedicated and talented NEDS trainers and our friends at Loon Mountain Alpine Ski School for helping out coaches on their journeys to higher accomplishments.