A note from Debra

Help Accelerate Research by Donating Blood

Posted on July 21, 2014 10:31 pm

 

Duchenne families:

If you have Duchenne muscular dystrophy and are between the ages 18-25 years old, or if you have a son with Duchenne that age, you can help accelerate research by donating blood. 

A research group has requested Sanguine to collect blood from donors diagnosed with Duchenne muscular dystrophy. You can donate blood without leaving home. You will be reimbursed $50 for your time, plus an additional $25 can be donated to CureDuchenne.  

For more information about how it works and the study requirements, click here.  Click here to sign up.

Duchenne Duplication and Rare Mutations

Posted on July 16, 20149:08 pm

Several years ago, soon after our son, Hawken’s diagnosis of Duchenne, I was at a conference, and full of mutation envy. Our son has a deletion of exon 45 and at that time, the most promising therapy in the pipeline seemed to be PTC124 (ataluren) which would target stopcodon mutations. Many of us were wishing Read more »

Climb to Cure Duchenne: Hike Mt. Adams with Tyler Armstrong August 22-24

Posted on July 10, 20145:08 pm

Tyler Armstrong, 10, will be climbing Mt. Adams as a training climb in preparation for reaching the Seven Summits. Tyler has already climbed two of the Seven Summits – Mt. Kilimanjaro and Mt. Aconcagua – to benefit CureDuchenne, a nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy. Tyler is the Read more »