As someone living with a rare disease I am writing today to bring awareness on behalf of all of us living with a rare disease as tomorrow is rare disease day.

If you are an individual who has a disease that affects fewer than 200,000 people in the US than this day is also for you!

Rare disease day 1st got started in 2008 in European countries but in 2009 became recognized by the US. It has since became a world phenomenon with 84 countries in 2014 recognizing this day!

Here is the official video For Rare Disease Day 2015:0

About my disability, I was diagnosed at 12 with a genetic, life shortening, nerve disorder called Friedreich’s Ataxia. Its basic causes are a loss of balance, coordination, and fine motor skills. There are lots of symptoms that come along with FA that are determined on the specific individual who has it. Some of my symptoms so far have included: scoliosis (curvature of spine), turning in of feet, heart issues, diabetes, some vision changes, and slight hearing loss. That is about it for now. Yay me! I walked (clumsily) until I was 18, drove a car for 7 years, and now I am doing good to drive my power wheelchair:)

If you would like to learn more about FA you can go to

Together we can raise our hands to make everyone aware!

Rolling on, Stephanie