Hi,My name is Averill and I am training to become an Occupational Therapist. I wa wondering if I could ask you guys about your experience with health professionals especially OT?Have you had a positive experience with your OT's have they provided you with tools for an enhancement to your daily living?Have you had a negative experience?Is there anything you look back on and wish your OT had done differently?Many ThanksAverillSee More

Here is the message I tried recently to post at the Advisory Committee Group:I couldn't find a way to comment on the news on the website, which would be a useful feature for users as well as the staff who write the news.This message is about the September 18 recap regarding the Duchenne platform trial community meeting.I am in favor of all the options put forward, but I am more than surprised that you didn't address the Becker patients as well.Becker is really part of the Duchenne community,…See More

Hello everyone! If you have a moment, please consider signing my petition to approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy.https://www.change.org/p/food-and-drug-administration-approve-vyondys-53-golodirsen-for-the-treatment-of-duchenne-muscular-dystrophy-2See More