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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!


 

Patient Perspective: Brittany's Experience Participating in Research Studies

Patient Perspective Collage 2Hello, my name is Brittany Sommerfield and I am 24 years old. When I was 11 years old I suffered from a Crohn's Disease flare up and was ultimately hospitalized for a month. Because I was bedridden for weeks my movements had become slower and unsteady. When physical therapy said I wasn't getting better after some months, I was referred to a neurologist. At this time as I was so young, I really didn't understand what was truly going on. Eventually, 'ataxia' was brought up to my parents and they started to look at their middle daughter (my older sister)- Chelsey; who was displaying similar symptoms at this time. Within a year, many tests were done and blood work was sent across the country. Then, just after I turned 13, in March 2007, my sister and I were given the genetically confirmed diagnosis of Friedreich's Ataxia (FA).

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Read more: Patient Perspective: Brittany's Experience Participating in Research Studies

Annika Venter

Annika Venter 2Name: Annika Venter

Age: 18

Where do you call home? I currently live in Cape Town South Africa.

Education: I am busy with my last year homeschooling.

What is your relationship status? I am single. I live with my twin sister and my mom.

What's a typical day for you? My day is very simple, I normally do school work, exercise, take my dog to the beach, go to physio and visit family and friends who live nearby.

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Advocacy - Our Voices Roar When Joined with Others

Advocacy CollageFARA is fortunate to join many umbrella organizations in advocating for the rare disease community. Together, we bring the patient's voice, concerns and needs to a wider audience as an American FA patient changes from one in 5000 FA patients to one in 30 million people with a rare disease, or 10% of the US population.

Several of these organizations offer opportunities to patients for education, advocacy training, networking and exposure. Together, your voice adds to the conversation that shapes our laws, healthcare, clinical trials and much more. Some of this is possible through events such as a workshop or summit, but travel is not required to be an advocate. Throughout the year, you can gain information on current issues that affect the rare disease community and learn what each of us can do to help raise awareness and support through newsletters and webinars. Sometimes what is needed is as simple as sending an email or calling a legislative office.

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Kailey Newcity

Kailey Newcity copyName: Kailey Newcity

Age: 27

Where do you call home? Lake Charles, Louisiana

Education (degree(s): Bachelor of Science in Medical Assisting, but I cannot work in the field. I work as a check out receptionist (sit down job) at an Orthopedic Clinic part-time.

What is your relationship status? I have a boyfriend of 5 years who I live with. No kids.

What's a typical day for you? I work three days a week, do physical therapy twice a week, & see a chiropractor once a week.

How long have you known you are living with FA? I started having obvious symptoms 4 years ago & was misdiagnosed with Charcot Marie Tooth Disease in 2015. I found in February of this year that I actually have FA.

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Read more: Kailey Newcity
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