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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!


 

Rare Disease Week 2018

RareDiseaseWeek2018FARA Staff and Ambassadors had a significant presence in Washington DC during Rare Disease week. The week kicked off with a showing of “The Ataxian” to over 230 people! The team then joined advocates from the National Organization for Rare Disorders in speaking to legislators from their home states & advocated for them to: join the Rare Disease Caucus to raise public awareness about the unique needs of the rare disease community; help reduce barriers to genetic testing & improve the time to diagnosis; support the repurposing of FDA approved drugs for additional diseases to help save more lives & reduce drug development costs; and increase NIH & FDA funding. Our congress people are listening and do care! Some joined the Rare Disease Caucus & the FA community got a shout out on a legislator’s FB live feed! We learned that: rare disorders are “above” politics; holding ourselves & our legislators accountable will positively impact the process; legislators want to hear directly from patients, and our voices will be heard if we are clear & concise about what we need. Great Job Everyone!  Add a comment

Read more: Rare Disease Week 2018

Corey Pemberton

CoreyPemberton1Name: Corey Pemberton

Age: 32

Where do you call home? Centerville, Ohio

Education (degree(s): Management Information Systems, B.A. Ohio University 2008

What is your relationship status? I am currently single. I live by myself in my own home in Las Vegas, Nevada.

What's a typical day for you? I work weekdays for the Bureau of Reclamation in Boulder City, Nevada. It is about a 30 minute commute ride from Las Vegas. I drive my own car there.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old. (January 2004) I first noticing my balance was off in the summer of 2003.

Are there any others with FA in your family? Yes, my brother, who is 5 years older than me. 

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Read more: Corey Pemberton

Aimee Clifford

AimeeClifford1Name: Aimee Clifford

Age: 29

Where do you call home? New Brunswick, Canada

Education (degree(s): I am a licensed makeup artist.

What is your relationship status? I have a boyfriend, but we don't have any kids. I also live with my parents.

How long have you known you are living with FA? I was diagnosed with FA when I was 14.

Are there any others with FA in your family? My grandmother thought she had MS, but my doctors say she was misdiagnosed.

Describe your transition from walking to walker/wheelchair. I walked all through high school, and a few years after, I sometimes walked arm and arm with people. When I went to beauty school, I used a mail cart for independence. I walked with a cart for quite a while afterwards and when I went shopping I would use a shopping cart. I still don't want to be dependent on a wheelchair and my physiotherapist thinks I'm strong enough to walk with my cart. She wants to get me a walking device to use around the house. I still use stairs holding someone's arm. 

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Read more: Aimee Clifford

Patient Perspective: Christina's Experience Participating in a Clinical Trial

PatientPerspective Christina1My name is Christina Logan. I am 27 years old and have been diagnosed with Friedreich’s Ataxia for 7 years now. I am a strong advocate for the FA Community; I once was a FA Ambassador who managed the social media accounts for the Friedreich’s Ataxia Research Alliance (FARA), and I am now enrolled in my third clinical trial. I live independently and work full-time in Philadelphia, PA. I have an amazing support system of family, my fiancé- Justin, friends and FAmily who help me do what I do every day.

I truly believe in the quote, “hope is stronger than fear.” Hope is an emotion that my family and I feel after we attend the Friedrich’s Ataxia Symposium hosted by the Children’s Hospital of Philadelphia (CHOP) every year. The past symposium, held in October 2017, Takeda Pharmaceuticals was discussed during the research pipeline presented by FARA’s Executive Director, Jennifer Farmer. She mentioned that Takeda Pharmaceuticals had a phase 2 trial planned for TAK-831. The purpose of this study is to see if TAK-831 improves daily activities of life by evaluating upper limb motor function and manual dexterity. What stuck out to me the most is the possibility of improving daily activities of life and dexterity. 

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Read more: Patient Perspective: Christina's Experience Participating in a Clinical Trial

Brittany Waters

BrittanyWaters1Name: Brittany Waters

Age: 30

Where do you call home? Maine

Education: Bachelor's degree in Public Relations

What is your relationship status? Do you have children? Married with 2 small children.

What's a typical day for you? I wake up really early with my toddler and then I keep both kids alive all day.

How long have you known you are living with FA? I started to realize there was a problem when I was a senior in high school. I wasn't diagnosed until I was 22 though, because I put off the test for a while so I could focus on my first couple years of college. I was a little afraid to know the truth too.

Are there any others with FA in your family? As far as I know, I'm the only one. Nobody else wants to be tested though.

Describe your transition from walking to walker/wheelchair. I still furniture walk at home, but I had to start using a wheelchair when I go places about two years ago. The hardest part for me has been getting over my pride. I imagine that people view me as a lesser human because of my obvious disability. I deal with it by being as present as I would be without the chair. I fight the urge to try to disappear. 

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Read more: Brittany Waters
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