Suneel's Light - Meet the Boys - Jon P.
Jon views Duchenne as something he deals with; but refuses to let Duchenne define who he is. As a result of this attitude Jon has earned the rank of Eagle Scout and participated in the FIRST Robotics Team during high school.
Currently he is attending Nazareth College in Rochester NY to pursue a degree in Biology. He is active on campus; participating in the Nazareth Commuters Association, he is currently looking to begin an iGEM competition team on campus. iGEM is dedicated to education and competition in the advancement of synthetic biology.
In addition, Jon is actively participating in a Duchenne specific clinical trial for safety for the drug Altaluren at Columbia University. This trial drug also being used for Cystic Fibrosis as well as Duchenne and is specific to Duchenne patients with a stop codon mutation. This mutation only affects 10 to 15% of the Duchenne population.
Jon has previously participated in the MRI Imaging trial at the University of Florida. This trial uses MRI technology to read the changes in the muscle which previously could only be analyzed using a muscle biopsy.
Jon also helps the entire Duchenne community by traveling to Washington DC with his mom Christine and older sister Kat to lobby congress to ensure that the NIH and the CDC funding for Duchenne projects continues to remain a priority.
Jon is also a member of the Advisory committee of a study on Therapeutic Misconceptions in Clinical Trials. Jon was also selected to be a panel participant on being a clinical trial subject at the 2012 Parent Project Muscular Dystrophy Annual Connect Conference.
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