Tag Archives: father

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!


Fatherhood: The most important job you’ll ever love!

Man and young boy outdoors playing airplane smilingWhile there have been many studies showing the importance of maternal influence on children, new findings show that a father’s presence can make a big difference in the social development of offspring. Researchers have found that mice raised without a father were more aggressive than those raised with both parents, and abnormal social interactions were more common. This is consistent with human studies of kids raised without their fathers, where higher incidences of substance abuse and deviant behaviors are seen.

Why is this important? In 2012, it was estimated that 1 in 3 children in the United States- or about 15 million children- lived in a home without their fathers. Compare this to 1960, when only about 1 in 10 children grew up without their fathers. This research shows that both parents are very important to a child’s mental health development, and that parents should be aware of potential social and behavioral changes in children raised without a father’s presence.

Dads- are you hearing this? You are so important in your kids’ lives! Take advantage of the moments you spend with them. They depend on you!