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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!


 

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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Diversity Among Wheelchair Users

 

Society's Profound Need to Recognize Diversity Among Wheelchair Users

In the past few years, since the combination of getting a degree in public health and dealing with my middle sister's and my FA becoming more and more progressed, I have been feeling an urgent need to recognize that simply using a wheelchair does not mean all wheelchair users are, in any way, equal. Here are my thoughts...

"Just as it is illogical to consider all mammals the same because they are warm-blooded, there is no logic in saying all people who use wheelchairs are alike merely because they must rely on wheels for mobility." I wrote this sentence for my thesis project, but thought it was very apropos here. Thus, to me, a wheelchair user for over twenty years, there is an aching need to recognize the diversity among wheelchair users. Although we all use the same type of wheeled assistive device for mobility, individual wheelchair users often possess diverse abilities and have highly unique, specialized physical needs, in addition to individual personality traits and cognitive and emotional responses. In other words, people who use wheelchairs are neither the same individual, nor are they necessarily paralyzed or impaired from only from the waist down; speech, manual, vision, hearing, skin sensations (i.e. tingling, buzzing, burning, or numbness), fatigue level, ability to sleep, and many other complicated physiological processes may be affected.  Robbi and her sisters, Becca (left) and Katie (center). Of course, these physical symptoms vary considerably by disease or condition and they may vary still further from one person to another. The overwhelming majority of people I meet tend to assume that because I look "normal," but use a wheelchair, I must have the typical symptoms of a person with paraplegia: full motor control, no hearing impairment, no difficulty articulating, and no fatigue. I want to scream out sometimes, "NO! I am NOT paraplegic!"

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We Care About Rare

On September 20th and 21st, I had the honor of attending the Global Genes Patient Advocacy Summit and the Tribute to Champions of Hope gala in Newport Beach, California. Global Genes is an organization passionately dedicated to advocating, unifying and bringing much needed awareness to the rare disease community. After a close friend had a child born with a rare disease, Nicole Boice was introduced to life with a rare disease and learned first hand that rare diseases, although rare, are collectively larger than the combination of both the AIDS and cancer communities. Although rare disease as a whole affects such a large amount of people, only a very small percentage of these diseases have an organization to advocate for them and support research. Something desperately needed to be done. In 2009, Nicole Boice founded the Global Genes project with the mission to give patients/parents/families of rare disease the tools & opportunities to become advocates, network with others and bring the rare community together in support of each other, research and education. Please visit www.globalgenes.org to learn more about this wonderful organization. To hear president Nicole Boice share about her inspiration and hope for Global Genes and all rare diseases, please click here.

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6th Annual Century 21 King Golf Classic

The Friedreich’s Ataxia community has so many wonderful people working so hard towards a singular goal: treatment and a cure for FA. I always feel so blessed and thankful to attend FARA events, it’s so encouraging to be striving for a different future alongside fantastic people as dedicated as the Lamascus and Cardenas families. The Annual Century 21 King Golf Classic, held in Fontana, California on September 19th, is the result of the dedication and faithful friendship between two families.

When Josh Lamascus was diagnosed with Friedreich’s Ataxia his dad, Brian, asked his good friend, Julio Cardenas, if Julio’s annual golf classic could be dedicated to raising funds for the Friedreich’s Ataxia Research Alliance. The answer was and continues to be a very supportive YES! When I say that this tournament is rooted in faithful friendship, I am not exaggerating one bit, the bond between these families is strong and clear to all that attend the event. In the face of something as devastating as a diagnosis of FA, faith and friendship can move mountains. I am so thankful to be pushing towards the same finish line as the people behind this event, I have no doubt we will reach the triumphant end!

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