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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!


 

Patient Perspective: Kyle's Experience Participating in a Clinical Study

Clinical Study Review: Metabolism in Friedreich’s ataxia (FA)

Recently I volunteered for a study with Dr. Shana McCormack at the University of Pennsylvania (UPenn) in collaboration with The Children’s Hospital of Philadelphia (CHOP). Dr. McCormack is an “Endocrinologist”, which means that she studies the how our bodies’ hormones control various and important bodily functions, such as: sleep, metabolism of food for energy generation, our mood, our growth and development, for example.

During my participation in this study, I thought about the difference between a “clinical study”, and a “clinical trial”. Dr. McCormack was not testing a new therapy (i.e., clinical trial), but was instead studying a feature of FA with the goal of enhancing our medical knowledge of the disease (i.e., clinical study). Armed with this knowledge, clinicians and researchers are empowered to develop better treatments for FA. The natural history study, for example, is a clinical study that has greatly improved our understanding of FA disease progression, and has positively influenced how Pharma companies design FA clinical trials. Just like when I volunteer for a clinical trial, I am confident that my participation in Dr. McCormack’s clinical study is getting us closer to treatments and a cure. 

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8th Annual Pull for a Cure

8ann Pull4aCure"The 8th Annual Pull for a Cure was held on Saturday, February 10th. If you’ve never been or heard of this event, it is one you don’t want to miss! Held at Tampa Bay Sporting Clays, the day started with clay shooting on an 8 station shooting course and ended with a tasty meal catered by World of Beer. The event also featured massages, raffles, live entertainment and a craft beer & food pairing class for non-shooters!

This year there was a cowboy theme! One of our newest donation raisers this year was the ‘Paul Avery Roping Competition.’ After the raffle winners were announced, they asked who wanted to donate money and see a real cowboy, Ben Barthle, rope my dad. Of course, everyone jumped up to donate and then the roping commenced. This definitely brought a lot of laughs and a lot of funds for FARA.  Add a comment

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UCLA/FARA Friedreich's Ataxia Patient Symposium

On February 23, 2018, I attended the UCLA symposium on Friedreich's Ataxia put on by FARA in Torrance, California. I decided to attend this event because it was only about 230 miles from my home. Since my diagnosis in 2002, I had never actually personally met another person with FA. Needless to say, I was very excited to attend the event.

I was not disappointed. After meeting several fellow FAers, they were extremely friendly and immediately made me feel like part of the FAmily. For many years I have been wearing a mask of sorts as a coping mechanism. Putting up this front has been completely exhausting. It was a wonderful feeling to drop the mask and be completely open and honest with other FAers. It was great to discover that myself and a fellow FAer had both fallen and broken off our front teeth. We were both laughing while we were telling the story of this similar experience. Whenever I have told this story to someone without FA, they don’t quite know how to react and it becomes somewhat awkward. My tooth has been completely replaced so I think it’s a funny story. Words really can’t explain the feeling of removing the mask, even if only for one day. 

2018UCLAsymposium

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Marinda Cauley

MarindaCauley1Name: Marinda Cauley

Age: 25

Where do you call home? Chattanooga, TN

Education (degree(s): I have a Bachelor’s in Foreign Language and Literature, and I am working on my Master’s in Romance Languages with a focus in literature. I am working towards earning my PhD in Latin American lit.

What is your relationship status? I am married, and have two step-children.

What's a typical day for you? On a normal day I go to work (teaching high school and middle school Spanish) at a local private school, then I come home and hang out with my husband and dog (George). We play videogames and I do my grad school work!

How long have you known you are living with FA? I was diagnosed 3 years ago when my little sister went to see a doctor about her issues with balance. They eventually figured out that she had FA, so I got tested and we found the same for me.

Are there any others with FA in your family? My younger sister. She is 21.

Describe your transition from walking to walker/wheelchair. I have not yet made a transition to using any assistive device full-time (I’m being stubborn). I got a scooter for work, as the school is really difficult to navigate (it’s a real-life M.C. Escher painting). I leave my scooter at work when I leave. This is the first year (out of three) that I have had something like this at work. My sister is studying abroad in Scotland currently and has taken to using a sparkly gold cane, though I think it is primarily so that people won’t think she is drunk. 

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Patient Perspective: Stephanie's Experience Participating in a Research Study

PatientPerspective SM1Participating in research for Friedreich’s Ataxia (FA) is a choice that I have consciously made inside this disease that I did not choose. A choice that makes me feel empowered. And useful. And needed. I was diagnosed with Friedreich’s Ataxia 14 years ago and at the time, actually participating in a clinical trial would have sounded as foreign to me as my diagnosis. The other day I asked Dr. Susan Perlman, my brilliant and kind neurologist at UCLA, when I first began yearly participation in the FA Natural History Study (FACOMS); September 2005. About a year and half after my diagnosis, I had chosen how I would react to living with a rare disease like FA. And I still choose to react with action.

In 2005, I might not have completely realized the importance of participating in a research study that just seemed like a fairly routine annual doctor appointment. 13 years later, the gravity of this (and every) study is more than crystal clear. Every year, I get to spend time with Dr. Perlman as she checks my non-existent reflexes, the sensation in my fingers and toes, tests my core strength, my leg coordination, my speech, vision, etc. And then comes the really fun part…what seems like a hundred pages of a routine questionnaire (okay, I’m being dramatic…it’s probably only 20 pages). That is followed by a 9 hole pegboard test which has got to be the most unpopular of tests among FA patients. The plastic pegs feel almost impossibly slippery and my hands feel even more uncoordinated and clumsy. Oh, and it’s timed. The pressure is on and the frustration is high. But if it meant, treatment or a cure would be found faster, I would face that pegboard every single day. 

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