A father, a rare disease, and a second chance

iStock_000014156140SmallHave you ever heard of Pompe disease? It’s a rare degenerative disorder that affects approximately 1 in 40,000 people, and it causes progressive muscle weakness. And children with the disease usually died of heart failure within a few years- that is, until one father did something about it.

John Crowley is a proud father of three, and two of his children have Pompe disease. After his children were diagnosed at extremely young ages and he found out that there was no cure for the disease, he quit his job as a drug company executive and started his own biotech firm- and developed a successful treatment that would keep his childrens’ hearts from failing.

While his children- now 16 and 17 years old- are still facing challenges from this disease, they are most definitely a shining example of hope and determination. A modern-day “Superman” of a father stopped everything to give his kids a chance. And that’s what we need- superheroes on a mission to raise awareness and show the ingenuity and passion required to develop new treatments and cures for rare diseases.

YOU can help. Speak up, raise awareness for these diseases and the children fighting them, and advocate for basic science and advancements made possible through research. Pass this on- share it with your friends and family, and let one father be an example of what we can do with the right amount of determination!

http://m.us.wsj.com/articles/SB10001424052702304854804579236133090050044?mobile=y