The Power of Families

In the United States today, we know of more than 6,000 rare or “orphan” diseases that each affect no more than 200,000 people. With so few people diagnosed, these disorders offer little financial incentive for pharmaceutical companies to study and develop treatments. The challenge of raising funds to advance science often falls to the families whose lives are impacted by a diagnosis that brings few answers.

In partnership with researchers though, families and friends can have a meaningful impact on the quest for better answers to help their loved ones. Our program in Baltimore, the Hunter Nelson Sturge-Weber Center, carries the name of a child whose family foundation is dedicated to raising money to fight the disorder that affected their son. Dollars raised by the families of other patients have been directly responsible for funding critically important clinical studies that would have been otherwise impossible. We have a long way to go, but I am deeply inspired by efforts like this one that Mitch and Jon are embarking upon. It will help us to raise awareness of Sturge-Weber Syndrome and push research forward at a more rapid pace.

I look forward to sharing more information about Sturge-Weber Syndrome in future posts.

Anne Comi MD
Director, Hunter Nelson Sturge-Weber Center
Kennedy Krieger Institute
http://sturgeweber.kennedykrieger.org/
Dream. Discover. Cure.