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Rare Disease Day 2015

Rare Disease Day 2015 (February 28, 2015) was a busy day of advocating for many of the 1 in 10 Americans with a rare disease. Those of us with and affected by Friedreich’s Ataxia did our part. We joined FARA’S social media campaign, Move Your Way for Rare Disease Day, by taking pictures and posting them on FARA’s Facebook timeline. We spent February trying to raise awareness and letting people know, to use the National Organization for Rare Disorder’s (NORD) motto, “Alone we are rare together we are strong.” The following are snippets about the days some of us spent at our statehouse to advocate for rare disease causes that day.

#AnnasArmy Purple Out

I have been seeing posts about #AnnasArmy for a few years now. They featured high school teens with lots of energy, smiling faces, purple everywhere and support for the FA community. So when I was invited to attend the annual #AnnasArmy FA awareness basketball game, I had to see what all the hype was about.

When we received a warm and energetic welcome at the Parkersburg South pep rally on Friday afternoon, the six hour drive from the greater Philadelphia area felt well worth it. We entered the gymnasium to find the entire basketball team sitting in the stands in purple long sleeve shirts. As more and more kids started to file in, all wearing purple, the excitement started to build.

Team FARA: Team Mustangs for Alison

In July of 2012, our daughter Alison Price was diagnosed with Friedreich’s Ataxia. Alison has experienced increasing neurological changes since that time. She struggles to walk on her own, but keeps trying and uses equipment and help as needed. Unfortunately, her heart is affected as well.

My sister Jill Gould, who lives in Largo, Florida and has been helping different groups raise money over the past decade, quickly jumped on board with our FAmily. We discussed a number of ways in which we could raise money. Jill had gotten into running so we decided we would find a half marathon to run and put a Team FARA together. Alison named us Team Mustangs after her interest in horses at that time. We decided that the Savannah Rock and Roll Half-Marathon in November 2013 would be our first race as Team Mustangs for Alison. Savannah is half way between Largo, Florida and Wake Forest, North Carolina. Jill gathered her team in Florida, I gathered mine from Raleigh, and we met in the middle with our sister Amy, a Georgia resident.

Ride Ataxia Orlando 2014

I signed my boyfriend Tom and myself up for the 2014 Orlando Ride Ataxia. This year’s event raised over $130,000 on November 2nd (a chilly day for Floridians, indeed) for FARA, tripling last year’s total! Before this November’s ride, I had volunteered at the 2011 and 2012 Ride Ataxia Orlando, but this Ride was the first time I actually donned a helmet and pedaled for my life, literally.

On my first true ride I attempted the four-mile course. I say “attempted” because I did just that—I didn’t get a chance to finish the route for a variety of reasons, but I’m thankful for trying and failing than to have never tried in the first place. As with scientific research, it’s important to trust in the process. I will attempt more Ride Ataxia’s, and I will very likely fail to complete more courses; however, I will ride further every single time, and I will eventually finish. It’s not important to finish the race every time—it’s important to learn how to finish the race. When the race for a cure is finished, I know that the doctors affiliated with FARA will have learned to finish the race and that the cure or treatment developed will have so much fidelity due to the uncountable hours put into the pursuit, and that it will be worth the wait, just like it’s worth the struggle, pain, endurance, and sweat to learn how to finish my own race.

Ride Ataxia Philadelphia and CHOP Medical Symposium 2014

philly141Learning from Philadelphia: What We Can Do As The Patient

Ride Ataxia Philly on Sunday, October 12th and the 7th Annual Friedreich’s Ataxia Symposium hosted by Children’s Hospital of Philadelphia (CHOP) the following day on Monday, October 14, 2014 was a positive and inspirational time for the FA Community. As the cyclists anxiously lined up to ride 5, 10, 25 or 50 miles on a beautiful Sunday morning, all were encouraged with the knowledge that every pedal made is a step closer to a cure. Ride Ataxia Philly hosted its 6th annual event this year in Blue Bell, PA with great sponsors such as Bonefish Grill, Carrabba’s Italian Grill and Outback Steakhouse. There were 475 riders and $215,000 was raised for awareness and FA research!

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