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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

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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Spotlight on Gunnhild (Andreassen) Lystad

A Norwegian Physiotherapist with FA

“I want my body to be in its best possible condition to fight FA all the way!”

 

Who: This beautiful, cat-loving, 36-year-old has a strong and supportive family, which includes a dashing Scandinavian husband, parents, two sisters and a brother; one sister is also diagnosed with FA.

What: Gunnhild graduated with a degree in physiotherapy from Luleå University of Technology. Her education helped begin an understanding of her diagnosis with ways to combat symptoms of FA through exercise. Along the way, she discovered this was a perfect opportunity to reach out to the FA community and share what works and what doesn’t work for her by writing a blog.

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Read more: Spotlight on Gunnhild (Andreassen) Lystad

Brooke Ziegler

imageName: Brooke Ziegler

Age: 26

Where do you call home? Wichita, Kansas

Relationship status? Do you have children? In a relationship.

Occupation/Employment: Stay at home dogmom/girlfriend, hehe. But really I seasonally work for a local business, I volunteer a lot and I am a consultant for Scentsy fragrance and Velata fondue.

Education: Bachelors of Arts in Strategic Communication Alma Mater: Wichita State University

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Drake and Trisha

Name: Drake (aka bub)

Age: 8 years old

Where do you call home? Ohio

Do you have any brothers or sisters? I have a sister named Zoe.

What grade are you in? I am in the second grade.

What do you like to do in your free time? Play outside, play DS and play Xbox.

How long have you been living (or known you are living) w/fa? (When and how were you diagnosed?) I was six when I found out. They gave me a blood test that hurt.

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5th Annual Swing Away at FA

Wiffle Ball Tournament & Family Fun Day Benefitting FARA Saturday, October 18, 2014 In honor of Hannah and Austin Stacks

“These past five years have been an incredible success. We are ready for another successful five years. But truthfully, I hope we are out of business by then because we have cured FA!” -Jason Stacks (Dad to Hannah & Austin)

Swing Away is held at Cabin Fever Farm, the home of Mike & Sue Thomas, generous supporters each year, in Dawsonville, Georgia, about an hour north of Atlanta. The beautiful autumn weather brought together 8 tournament teams. This year’s event had approximately 250 people in attendance and has raised $42,000 and counting with the event and the letter writing campaign combined -- reaching $185,000 total since Swing Away began in 2010!

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