A note from Debra

79 Days of Duchenne Raises Awareness About Rare Disease

Posted on September 25, 2014 4:07 pm

 

79 Days…79 Videos…More than 79 talented individuals

A sincere and heartfelt thank you to Sarah Burgess for her talent, creativity and inspiration in creating the 79 Days of Duchenne project. Every day for the past 79 days a new video about Duchenne muscular dystrophy was launched to the song “Run Away” that Sarah wrote for her brother and all boys who live with Duchenne.

Thank you to the amazing and talented singers and performers who embraced the project and used your voice to help raise awareness about Duchenne. The 79 Days of Duchenne videos included all music genres from pop, acoustic, rap, rock, R&B, country, Christian and opera. The project has inspired performers from across from the U.S. as well as internationally from Canada, Indonesia, Jamaica, Morocco, Philippines, Russia, Slovakia, Switzerland and the United Kingdom.  If you missed any of the videos you can view them all here

CureDuchenne hopes everyone continues to take action, spread the word about Duchenne and raise money for Duchenne. One easy way to continue the momentum is to participate in our new Dollar 4 Duchenne campaign. Just donate a dollar, take a photo or video of you holding a dollar, share with your network, use #dollar4duchenne, #CureDuchenne. 

Duchenne is a progressive muscle-wasting disease that impacts 1 in 3,500 boys.  Currently, there is no cure for Duchenne.  The number 79 has significance for the Duchenne community. There are 79 exons in the dystrophin gene. Dystrophin is missing in the body of an individual with Duchenne. Without dystrophin, muscle cells easily become damaged, cannot repair themselves and die, resulting in heart and breathing failure. 

Projects like the 79 Days of Duchenne are important to raise awareness about Duchenne. The more we can raise awareness about this devastating rare disease the more money we can raise to fund critical research to find a cure. CureDuchenne continues to fund research to help accelerate access to potential lifesaving drugs for this generation of Duchenne boys.

We are grateful to all those who participated in the 79 Days of Duchenne project and those who helped promote and share the videos. A huge shout out to Sarah for all the time, dedication and effort she put into this project.

Together, we can CureDuchenne.

Cure Duchenne Has Funded All Types of Duchenne Research

Posted on September 23, 20145:15 pm

CureDuchenne is proud to have supported all types of Duchenne research over the past 10 years. That is why CureDuchenne has been a leader in funding exon skipping, stop codon, rare and duplications mutations, utrophin upregulation as well as anti-fibrotic and anti-inflammatory therapies during the past decade. Click here for full image. CureDuchenne’s focus is Read more »

Prosensa Update About Drisapersen & Other Programs Webinar

Posted on September 22, 20149:24 pm

UPPMD is hosting a Prosensa Update About Drisapersen & Other Programs webinar on behalf of all of its member organizations worldwide.   Date and Time:  Thursday October 2nd 2014 at 6pm CET (noon Eastern and 9 a.m. Pacific) Speakers:  The webinar will be presented by Anthony Hall MD, Medical Director Medical Affairs of Prosensa and he will Read more »