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Sam and Rebecca Hill

SamName: Sam Hill

Age: 16

Where do you call home? Annapolis, Maryland

Education: Current grade - Junior in high school

Who do you live with? My parents and two sisters

What's a typical day for you? I go to school every day and spend my weekends doing homework and spending time with my family.

How long have you known you are living with FA? I was diagnosed by a neurologist in November of 2015

Are there any others with FA in your family? My younger sister Rebecca has FA as well.

Breaunna Hoffman

BreaunnaHi everyone, I'm Breaunna Hoffman. I am from Pennsylvania. I'm 24 years old, and I was 15 when I was diagnosed with Friedreich's ataxia. Otherwise known as FA. I never really showed symptoms of FA growing up, except I was "clumsy." At 15, I developed severe scoliosis in my lower back. Doctors ran tests and diagnosed me with FA. Growing up I avidly played sports, so; I was in denial for years. I felt so alone until I was 19. I started using a cane to be more stabilized. At 22, I started using a rollator/walker, as much as I didn't want to be 22 in using a walker, it was a definite game-changer for me. It gave me so much freedom in my everyday life. It's allowed me to walk without having constant anxiety that I'm going to lose my balance and fall. Every day for me is different from the next. I watch my niece and nephew. I'm currently enrolling in a clinical trial for FA, & I'm also a FARA ambassador. I became an ambassador because I find spreading awareness for FA is so important!! I enjoy spending time with family friends and my boyfriend. I love to travel and listening to music.

Şeyma Öztürk

Seyma 3Name: Şeyma Öztürk

Age: 23 years old

Where do you call home? Denizli, Turkey

Education degree(s): Post Graduate Education/ Be an academician and being the first academic FA patients in Turkey.

Who do you live with? I'm single, no kids. I'm living with my family.

What's a typical day for you? I wake up, have breakfast, have a rest, watch the series on the computer, read books, sleep.

How long have you known you are living with FA? I was 12 years old, and under the control of a doctor at Dokuz Eylül University in Izmir, the tests were performed because they suspected FA.

Elvis Trompf

ElvisHello, my name is Elvis. I'm a personal trainer, a university student, and a FARA ambassador hailing from Sydney, Australia.

I was first diagnosed with FA back in October 2019 (I was 26) when it was confirmed with a genetic test but was given the general diagnosis of Ataxia in November of 2017.

Growing up, I had always felt different from the other kids. I was a bit clumsy and uncoordinated, but still a cheerful guy. I always took comments about my symptoms in my stride; until they started to become more pronounced and noticeable, and walking around had started to become increasingly difficult.

Henry Sykes

Henry SykesName: Henry Sykes

Age: I am 22

Where do you call home? Kent, United Kingdom

Education degree(s): I have qualifications in English, Mathematics, ICT, and a BTEC in Motorsport Engineering. I'm very interested in Social Media and provide consultancy for a number of local companies.

Who do you live with? I live with my parents, brother and his girlfriend.

What's a typical day for you? I'm contracted two days a week to assist a local landscaping supplier to help manage their website and online orders and general office work. I then assist other private clients with online advice and support.

Subcategories

FARA Ambassador Program

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

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

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!


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