Four weeks from today, I’ll run my seventh race of an injury-shortened 2015, crossing off state number 10 in my quest for 50.
Along with my mom, Taylor’s Tale President Sharon King, I’m headed to The Keystone State’s largest city, Philadelphia. But I’m not running in a large event like the local Rock ‘n’ Roll Half Marathon or Philadelphia Marathon. Instead, I’ll take on the Bryn Mawr Running Company’s Schuylkill River Loop Race, a cult favorite since its founding in 1972.
At 8.4 miles, it’s a rare distance.
Set on a recreational path around the Schuylkill River and nestled among some of the city’s most historic sites, it’s a perfect opportunity to connect with Philly advocates and families fighting the good fight against rare disease. I can’t wait to meet these rare disease warriors when I run in my 10th state:
- Garrett Coyne, 5, who has infantile Batten disease (the same form as Taylor), and his family
- Kristin Smedley, president of Curing Retinal Blindness Foundation
- Stephanie Fischer, rare disease patient, stroke survivor and senior director at EveryLife Foundation for Rare Diseases
Philadelphia has a population of 1.5 million-plus. One in 10 Americans suffers from a rare disease. At that rate, the city has about 150,000 rare disease patients, plus many more family members and friends of those patients who are deeply affected by the brutal physical, emotional and economic cost of rare disease.
This race is for my sister Taylor, but it’s also for the one in 10 people – more than 30 million in all – in our great country who suffer from one of 7,000 rare diseases. If you’re in the Philadelphia area on Sunday, December 6, I hope you’ll consider joining Taylor’s Tale and local rare disease advocates to run – or cheer – for the millions who can’t.
Questions? Contact Taylor’s Tale.