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FARAFARA Cure FA

Team FARA Blog

Team FARA members are running, walking, biking and swimming for FA research around the world.

While they are geographically dispersed, Team FARA is united with the same goal: to draw attention to FA through acts of physical endurance and to support the advancement of FA research towards treatments and a cure for FA.

Rachel’s Runners - American River Parkway Half Marathon

I run because I can.

When I get tired, I simply remember those who can’t

And what they would do for this simple gift that I take for granted,
And I run harder for them.

 I know they would do the same for me.

 

In a combined effort of inspiration from my “fit-finatatic” mother and my dear friend Rachel Gill, years ago I decided to train for my very first half marathon. I devoted my every s

tep to Friedreich’s Ataxia Research Alliance in attempt to raise money and awareness for this rare but dreadful disease.

Rachel was diagnosed with Friedreich’s Ataxia over a decade ago, encouraged by her positive and bright spirit I finished my first half marathon. Since then, I have finished 2 half marathons/fundraisers and am now feeling better than ever, ready for my third. Each half has been motivated by Rachel, when I get tired I think of her perfect giggle and run harder for her.

I am proud to say the fundraisers have continuously been more and more successful each year. I decided to take a different route in my fundraising attempts this year and created a team. My team, Rachel’s Runners, consists of almost 20 runners. Each and every runner was asked to help spread the word and educate others about Friedreich’s Ataxia. Our goal was to raise $10,000 and while we are still far from that goal, I am very happy and proud of the number of people we were able to reach as a team and the effort that each runner has put into this cause.

Our race is May 4th, Rachel’s Runners are both very excited and more than prepared to take on this 13.1 miles in honor of Rachel.

If you would like to join or sponsor our team please follow the link below, titled RACHEL’S RUNNERS. Any contributions would be greatly appreciated. Thank you in advanced for your support.

RACHEL'S RUNNERS

 

Elizabeth Way - Flower City Half Marathon

A few months ago, my good friend Tyler and I decided to run the Flower City Half Marathon, and support each other in our training efforts along the way.  Since I'm running 13.1 miles, and I've never run more than about 7 miles at a time, I immediately knew I wanted to use it for something bigger than myself- as a fundraiser for something.  And then I immediately knew what I wanted to fundraise for.

Read more: Elizabeth Way - Flower City Half Marathon

St. Patrick's Day 4 Miler - Team Kelly Alfieri

When my cousin's son, Christopher, was 10 years-old, he was diagnosed with FA. When she told me I said, "we need to fight this". I told myself that I was going to do something to help this cause. It is not fair for children and adults to have to deal with this. I love my cousin like a sister. Christopher is like a nephew to me and I couldn't just sit and do nothing.

I did some research on FA and that is how I found FARA. The website is fantastic.  I love that it provides information on current studies of FA research as well as patient and family resources. After I read over the website, I decided to join Team FARA. 

Read more: St. Patrick's Day 4 Miler - Team Kelly Alfieri

Pedal for Phil

Team Pedal for Phil participated in Team FARA – Tour de Palm Springs 2013. Pedal for Phil fundraised over $8,000 for FA Research on behalf of Phil Singer.  Check out this great video about their Team FARA experience! Video created by Rowena Leong Singer.

 

Team Pedal for Phil Video 

Team Chelsea

In Palm Springs 2013 we ride in honor of Chelsea Lane

 

 

 

There are several active clinical trials around the world now and a lot of basic science and translational science in the pipeline to keep fueling trials until we cross that finish line to treatments and a cure.  If you visit FARA’s treatment pipeline (http://curefa.org/pipeline.html), you will see numerous approaches to treatment for FA in development- a stark contrast to when FARA started and there were no trials and very little research in FA.  FARA has spent the last 15 years gaining momentum in science, fundraising and partnerships, but it had to start somewhere.

 

Read more: Team Chelsea
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