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FARAFARA Cure FA

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!


 

Swing Away at FA

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4th Annual Swing Away at FA
Saturday, October 19, 2013 Wiffle Ball Tournament & Family Fun Day
Benefitting FARA

 

In honor of the Stacks Family Jason and Candy, parents of Hannah, diagnosed with Friedreich's Ataxia in 2009, and, after three years of praying “that lightning wouldn’t strike twice,” her younger brother Austin, diagnosed in 2012.

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Christina Logan

Hello! My name is Christina Logan! I am 23 from Bucks County, PA. I come from a loving family who has helped shape who I am as a person today. They taught me how to be a good and striving person, and they have given me their unconditional love from the start. We have such a strong bond that nothing could tear us apart. Family truly means everything and I know they are here for me until the end.

So far, I have led a very fulfilled life with amazing experiences! Growing up, music has taken up a huge part of my life. I was very active in the musical departments at school. Since third grade, I've played the viola, piano and even tried the drums! In high school, I participated in the school orchestra, marching band and choir. My senior year, I even made first chair viola! I was fortunate enough to travel overseas for each group. I went to Italy, Ireland and England. They were the most incredible life events and I wouldn't change them for anything!

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RA Philly & CHOP Symposium

 

Five Ambassadors share about one great weekend.... Ride Ataxia Philly & the FA Symposium at CHOP!

I recently went to the Sixth Annual Freidreich’s Ataxia Symposium at Children's Hospital of Philadelphia (CHOP) with my very supportive father! This was our first year attending so we didn’t know what to expect. I was diagnosed almost two years ago with Friedreich’s Ataxia. So we were looking forward to meeting and connecting with new people and obtaining new information about treatments for this rare disease! 

The symposium was very informative between topics of current research of treatments, genetic testing, physical activity and mobility, and perspectives on clinical trials and driving! My dad and I got something out of each topic and left the symposium with new knowledge.

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Catherine Brent

CatherineMy name is Catherine Brent. I am 28 years old and I grew up in Sandy Springs, Georgia. I come from a large blended family, my mother had four children from her first marriage and my father had one. After my parents got married, they had me and then my sister. We won the genetic lottery and were both diagnosed with Friedreich's Ataxia almost 2 years ago.

I was diagnosed definitively in January of 2012. Although I was only diagnosed with FA recently, I started showing signs of neurological problems around age 5. I would trip and fall a lot more than other children my age, I lost my balance frequently, I had loss of feeling in my legs, no knee reflexes, and walked more of my tip toes. I was described by my father as walking like a drunk. I was diagnosed when I was 8 with Peripheral Neuropathy, and when I was 13 my diagnosis changed to Chronic Inflammatory Demyelinating Polyneuropathy. family

Through the years my balance and gait continued to get worse. I was a self-proclaimed furniture walker. I would hold on to things in order to keep myself balanced and would stare at my feet in order to see where I was walking because I could no longer feel my feet. I remember my younger sister telling me that people thought I was antisocial because I would walk with my head down and not acknowledge people in the hallways of school.

I did have my own issues with depression growing up. I didn't know anyone with a disability. I felt alone, because I didn't think that anyone could understand me. Don't get me wrong, I had absolutely wonderful friends that would make me feel a part of everything. I also had the most supportive family in the world. My mother made me believe that I could do anything that I wanted to do. She was my best friend. In 2000 when I was 15, I lost my mother to her own battle with depression when she committed suicide.

In the heartache of losing my mother, I continued to worsen physically. I could no longer just be the furniture walker that I was. I needed a person's strength to help me stay balanced. Luckily, I did have wonderful friends and a younger sister that would walk with me to and from class. My sister was always smaller than I was, and she was also very popular in school. I appreciated her immensely, even though I may not have always made it known. There were times that I would trip and I would bring her down with me. So, there we were, two sisters on the floor of the hallway at school. We would laugh, even though I know she must have been embarrassed.

When I was 17, I finally bit the bullet and my father started the process of getting me a wheelchair. My wheelchair was a godsend that let me get my independence back. My house wasn't wheelchair accessible in the slightest. My bedroom was on the second floor. The later years of high school were actually hilarious when I think about it. I would scoot up and down the stairs, and I even think I may have dragged my chair up the stairs a few times. Luckily, I have always had a lot of upper body strength and I haven't lost it.

When I graduated from high school, I attended the University of Georgia. They had a wonderful disability resource center and I also had two brothers that were living in Athens. When I was a junior, I moved off campus into a two bedroom house. I lived with my brother for a year and then my younger sister transferred to UGA and we became roommates. Towards the end of my sister's sophomore year, she started experiencing neurological problems. After 6 years of not knowing what was going on with her body, she was finally diagnosed with FA. I then got tested as well. We are both odd cases of FA. We both have one allele in the expanded size range and one in the normal size range. We were diagnosed because we both have extremely low frataxin levels.

During my time at the University of Georgia, I became involved with a student organization run through the disability resource Center, called LEAD (Leadership, Education, and Advocacy for people with Disabilities). During this time, I met a girl named Robbi Van Shoick. We became friends before my diagnosis with FA and throughout my sister and I's diagnosis, her family has been a great support system. Athens is a small town and we are always amazed that there are two sets of sisters here with this disease.

During the past couple of years, I have gotten back into acting which is my passion. I have done two wonderful shows with a local theatre group. I have also been a guest speaker twice in the class that Robbi co-teaches at UGA, "Communication with People with Disabilities". I also work in the records department of a non-profit called, Georgia Options. Georgia Options works with adults with developmental disabilities. Our mission is to get these individuals out of group homes and institutions and into their own home, so they can have life experiences like you and I. We live with FA, but FA does not define us.

Catherine

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Ride Ataxia Portland

Have you ever been to a big event like a wedding where you know a ton of people? That is how Ride Ataxia Portland felt to me. This was my second year attending and first time riding. The weather man had us down for rain, rain and more rain. I arrived at the event around 8am. The sun was peeking out and it was not raining. Yay!

There were friends, family, coworkers and many FA families as well. There were so many people to talk to and just a quarter of the people were there this early. The hour flew by. At 9am the 24 & 36 mile rides started. Everyone lined up and they were off! It then hit me that most of the members on my teams were doing the 12 mile route and we were doing a group photo afterwards. I am slow and needed more time so I left on my route at 9:10am rather than 10:00 like the rest doing the 12 mile route. My son, who is 10, rode with me all 12 miles right by my side.

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