ENDING Duchenne is the priority of Jett Foundation - but until that day comes - we must help our boys & young men LIVE THEIR BEST LIFE!
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"Gals for Cal" participate in the Danskin Women's Triathlon at Memorial Beach
July 26, 2009 from 7am to 12pm
A group of women, called "Gals for Cal", connected by friendship have each taken on a tremendous personal physical challenge to help fight Duchenne Muscular Dystrophy in honor of 7 year old Calvin Quitzau. Most of them have never competed in a triat…
I wanted to share an email that I received about Jacob Gunvalson, who has Duchenne:
Jacob has a premature stop codon and the drug company PTC Therapuetcis told the Gunvalsons not to take him off a drug he was on at the time, gentamycin for a 28 day…
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Jacob's story and his love of poetry
I wanted to share an email that I received about Jacob Gunvalson, who has Duchenne:
Jacob has a premature stop codon and the drug company PTC Therapuetcis told the Gunvalsons not to take him off a drug he was on at the time, gentamycin for a 28 day trial, and to wait for a longer trial...they did and then the drug company would not let Jacob have access even though the FDA was supportive. They sued a drug company to get their son use of a drug still in trial – they won in lower court in NJ, but… Continue
Jacob has a premature stop codon and the drug company PTC Therapuetcis told the Gunvalsons not to take him off a drug he was on at the time, gentamycin for a 28 day trial, and to wait for a longer trial...they did and then the drug company would not let Jacob have access even though the FDA was supportive. They sued a drug company to get their son use of a drug still in trial – they won in lower court in NJ, but… Continue
Posted by Christine on March 16, 2009 at 10:49am
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