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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Sam Hill

Name: Sam Hill
Age: 16
Where do you call home? Annapolis, Maryland
Education: grade: Junior in high school
Who do you live with? I have 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.
What do you like to do to stay active and what type of exercises work for you to stay strong?: I do not exercise very often, but I try and walk as much as I can.
Do you have any hobbies or special interests?: When I am not busy with my schoolwork, I enjoy spending time reading.
When FA gets you down, what do you think/do to feel better?: When FA gets me down, I try and spend as much time as I can with my friends.

Name: Rebecca Hill
Age: 12
Where do you call home? Annapolis, Maryland
Education: grade: 7th
Who do you live with? My parents and my two sisters
What's a typical day for you? On a weekday, I usually wake up and go to school and then come home and do my homework and watch tv before I go to bed. On the weekends I usually watch tv, play outside or hang out with friends
How long have you known you are living with FA? after we found out my sister had FA I got tested for it and was diagnosed in 2016
Are there any others with FA in your family? yes, my older sister has FA
What do you like to do to stay active and what type of exercises work for you to stay strong?: I like to bike around my neighborhood, play soccer and take my dogs on walks
Do you have any hobbies or special interests?: My favorite thing to do is play soccer, and sometimes I draw or paint
When FA gets you down, what do you think/do to feel better?: I try to focus on better things or listen to music to clear my head
Tell us a little more about you. I would like to keep playing soccer, and in the future, I would like to travel to somewhere in Europe

Your Names: Rolf Hill and Katie Burrows
Relation to FA patients: parents
What quality or trait has been brought out the most in you despite living with FA? FA diagnosis of two of our three daughters has enabled us to all work together to not only navigate the FA diagnosis within our family but to become a part of the FA community.
What did you find was the best way to discuss the diagnosis with Sam and Rebecca? We have explained to the girls and everyone what we truly believe, and that is that FA is a devastating illness, but that there is so much hope and that there are a countless number of people working to find a treatment and a cure for FA.
What advice would you give to other parent whose child is newly diagnosed? Connect with FARA and the FA community. They are a wealth of knowledge and support.
How have Sam and Rebecca inspired your life? Despite only two of our daughters being diagnosed with FA, all three are a true inspiration. Sam is an extremely dedicated and hard-working student, who has an energy depriving illness. She works so hard and excels in school while her body is simply exhausted. Polly does not have FA, and she is the first to offer to help, she is at every FA event we can get to, and she recently enrolled as a control group patient in an FA study. Rebecca has an FA diagnosis, but very little to no noticeable symptoms. She is a gifted soccer player who knows that FA wants to take that away from her. She continues to play soccer and excel, which takes more mental and physical strength than we can even imagine.
How have you been encouraged for their future living life with FA? When Sam was diagnosed in 2015 by Dr. Tom Crawford, he told us that he personally had so much hope for those living with FA. He said that the work being done in FA research would undoubtedly impact us in a positive way. His words have proven to be true, and we are constantly amazed at the breadth of FA research that is being conducted.
What is one way FA has POSITIVELY affected your lives? The FA community is like no other community we have ever been a part of. The people we have met and the friendships we have established will last a lifetime, long after we find a treatment and a cure for FA. Shortly after Sam was diagnosed, we established the Burrows Hill Foundation to Fight FA. The support from our friends, family, and community has been overwhelming. We hold an annual event 'A Night to Fight FA,' and in just four years, we have been able to contribute $400,000 to FA research, $30,000 to the Ataxian Athlete Initiative, and nearly $20,000 in grants to those with FA.

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.

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.

Andressa Ayres Pelanda

Andressa 6Name: Andressa Ayres Pelanda

Age: 35 years old

Where do you call home? I live in a seaside city called Pontal do Sul, in the state of Paraná, south of Brazil.

Education: I have a degree in Oceanography and postgraduate in pedagogical yoga and neuro-learning.

Who do you live with? I have lived with my partner for almost four years, and we have a two-year-old daughter.

Isabella (Bella) Zenteno

Bella 4Name:  Isabella (Bella) Zenteno

Age: 13 years old

Where do you call home? Fort Worth, TX

Education: 8th grade

Who do you live with? I live with my mom, stepdad, sister, and three brothers.

What's a typical day for you? I go to school and do lots of homework. I just got a puppy that we are training to be my service dog, so that's now become a daily job.

How long have you known you are living with FA? I was diagnosed in November 2018.

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