Geared toward high schools and colleges, this yearlong, student-led fundraiser culminates in a day of dancing. Fundraising helps kids at your local Children's Miracle Network Hospital—Boston Children's (that's us!).
When I was 17 years old I was diagnosed with a vascular anomaly caused by Gorham-Stout disease. It's an extremely rare and complex condition that requires highly specialized care. Through an unbelievable stroke of good fortune, I happened to live within a 30-minute drive of the only hospital on Earth with an established record of treating this disease, Boston Children's. More than a decade after the doctors there stabilized my condition, Alex Malloy, a boy from my hometown was also diagnosed with Gotham-Stout -- an unfathomable coincidence as the condition has been found in fewer than 300 people in the world. Alex's diagnosis and successful recovery allowed me to see how far Children's had advanced in their strategy for treating the disease and watching Alex thrive and continue to play competitive sports after a spine surgery was the most gratifying experience of my life.
Now, Alex and I have partnered to raise funds and awareness for vascular anomaly research at Children's. We share a positive story about our experience with a life-threatening condition, but unfortunately, rare diseases don't receive the same attention or funding as more common conditions and that directly impacts outcomes for patients.
We are asking friends and family to make a donation of any size to support the hospital that saved our lives and contribute to the most noble of missions: "Until every child is well"