I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.
Want to help? Bid on one of the very cool items on our online auction at www.runningforrarediseases.org – it ends on Friday, April 12, at noon, so you better hurry up! Not up for shopping right now? Put on some warrior paint, like Nick and I did above. Each of our Marathon Team members are paired with members of the rare disease community. Phil is running in honor of little Wylder James who battled Niemann Pick A disease, and his parents have started the Warrior Paint Campaign:
“To show Phil our love and support for his efforts, and to remind him our Warrior Wylder James will be with him in spirit every step of the way … we have come up with a Warrior Paint Campaign!! The goal is to receive 1,000 photos of YOU in your WARRIOR paint by next Monday!! It’s simple. Dabble a bit of Warrior Paint (aka. face paint, or sunscreen) onto your cheeks and the cheeks of those you love and send them our way. Send to me at firstname.lastname@example.org or post to the WN FB Page at https://www.facebook.com/Wylderjames ”
So get out your makeup or whatever and share the warrior in you!