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.

Scheduling Headaches

So it's easy to take for granted planning a trip like this.

I assumed, very wrongly, that it wouldn't be too difficult to engineer a schedule that would minimize days off and make travelling from one game to the next not too many miles than is possible to drive in one day.

As I started to plan the journey, I ran into many problems. The plan has always been to start in Boston (and to end in Boston, but more on that later), so we set a date of June 21st as the day to start. That's one week before my 30th Birthday and if we do that and head south, we'd be in Atlanta when the Sox take on the Braves right around the 28th.

The most logical path to me was - Start in Boston and go south, down the east coast. Then curve westward after Florida, go up from Texas to Colorado, back down to Phoenix, then California. After hitting southern California, head north to hit San Fran, Oakland and Seattle, then a long drive to the midwest to hit the Twins, Brewers and Chicago. Then back to the northeast to finish in Boston.

BUT, that didn't work. If we followed that schedule, we would have been in Los Angeles with nothing to do and on games for 12 days.

So then I tried going the other way - starting in Boston, hitting the midwest and basically reversing the trek. Also a no-go.

Finally I figured it out: East coast, back up to Toronto, midwest, down to the south, out to Cali, then a looooooong drive across the country to finish in Philly and New York. And the reason that I realized we don't even have to finish in Boston is because our last scheduled game would be August 6th in New York - Yankees vs. Red Sox. If that's not a fitting way to end a trip like this, then I'm not sure what is.

So it seems like fate is sorta guiding our little trip. It's a 47 day journey covering over 10,000 miles - it's going to be epic.

We're still unsure how it's all going to work out, but if we're able to raise a bunch of money and not collapse from exhaustion at any point, then I'll consider it a complete success.