Name: Gabrielle "Gabe" Ford

Age: I am 38 years wise

Where do you call home? I currently call Canandaigua, NY home but that can change. I'm originally from Michigan for most of my life so far. I lived in Florida for 4 years and Indiana for 5 months.

Education: I graduated from high school and went to a travel academy to become a travel agent. I am a certified travel agent but chose not to work in the public due to my condition and fears of the public eye. Now being more mature and wiser compared to back then, I'm not as concerned with the opinions of the public eye. Life with FA has been the best teacher!

My favorite FA event of the entire year is FA Woodstock. Now, I will admit that I am biased since FA Woodstock 2016 was my first FA event ever. Nevertheless, I am here to tell you about this phenomenal event that takes place every summer.

When you hear, "La Porte, Indiana," what do you think of? It probably isn't Woodstock, but it should be. FA Woodstock has tie-dye, camping, art, an unparalleled sense of unity and is 3 days of peace and music (the sound of rain, laughter, and wheelchairs rolling down the boardwalk). Though Jimi Hendrix does not attend and I have yet to see a Deadhead in attendance, Dr. Lynch is a spectacular substitution. And let's be honest, in the world of FA, Dr. Lynch is as cool as Jimi Hendrix. Each year, Dr. Lynch and his team attend FA Woodstock to collect blood and skin samples. (You'll have to forgive me. I have tried to be clever and find ways to compare FA Woodstock with Woodstock 1969, but for "blood and skin samples," I'm at a loss. Anyway...)

Name: Priscilla Weatherford

Age: 34

Where do you call home? Abaco, Bahamas

Education: High school degree and an Advanced Biblical studies certificate from Liberty University

What is your relationship status? Do you have children? No kids; live with parents.

How long have you known you are living with FA? When I was around seven years old, my thirteen-year-old sister was diagnosed with FA and that same doctor who diagnosed her suspected from my gait that I would develop FA as well. At around the age of eleven, I began losing my balance and noticing difficulties with coordination, etc. About a decade ago, my diagnosis was confirmed with DNA testing.

On Saturday, July 14, 2018, I went to Newport Beach to attend the Young Adult Representatives of Rare Disease Legislative Advocates (RDLA) event, who are a group ranging from 13-25 years old in the rare disease community. They call themselves YARR for short.  The event was about an hour and a half drive from my house. I'm 25, so I just made the cut.