Did you know that one in ten people have a rare disease? That’s more than 32 million people in the U.S alone that are affected by a rare disease.
You yourself probably know at least one, if not several of us. While rare diseases individually are, as the name suggests, rare, rare diseases as a group are actually quite common. The unfortunate thing is, that because of the rarity of these diseases, very little research goes into these diseases, and too often people with rare diseases are misdiagnosed or undiagnosed for most of their lives. Even when they do become diagnosed, many are disappointed to find that there is no FDA-approved treatments for their disease. Through my ride, I hope to change this.
The mission of Ride for Rare Diseases is to advocate awareness for rare diseases. Through speaking and presenting at various organizations, clubs, and other venues, I will raise support for us “zebras”, as many with rare diseases are called.
One main problem with rare diseases is that they are often misdiagnosed many times before they are diagnosed for certain, and I want to help reduce these occurrences. In addition to raising awareness, I also want to advocate for further research into how exercise can benefit people with my disease, Hypokalemic Periodic Paralysis.
To help support the cause, you can donate to the Periodic Paralysis Association non-profit organization at: https://www.periodicparalysis.org/site/donate-now/
You can also donate to Ride for Rare Diseases on GoFundMe, to help support my travel and ride expenses at: https://www.gofundme.com/ride-for-rare-diseases