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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!


 

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

Shandra PPerspective 1Hi! My name is Shandra Trantham and I am 20 years old. In early 2010, I was diagnosed with Friedreich’s Ataxia, after years of wondering what was going on with my body. I was only 12 years old and my parents wanted me to live my life as normally as possible, so I only went to the necessary doctors’ appointments. As I grew up, I taught myself everything I could about FA and clinical trials. I decided to apply to USF for undergrad, so I could easily participate in these clinical trials and studies, and I got accepted. Between my classes I participated in Moxie Part 1, RT001, the Gait and Balance Study, and the Natural History study. By mid-2017, most of the studies I had done were finishing up or completed and there was nothing left for me to do at the time in Tampa. Some of my closest FAmily friends (the Maugee family) told me about a study going on at UF, the Biomarkers Study. My friends Christian and Isabel Maugee were both enrolled in the study, which aims to collect data and samples to advance Dr. Byrne’s gene therapy research. It is a 5-year study with visits every 6 months, and I was only 2 hours away from UF by car, so I decided to sign up. 

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Marissa Graczyk

MarissaGraczykName: Marissa Graczyk

Age: 13

Where do you call home? Centerview, MO. We live about 45 minutes east of Kansas City, on a small farm.

Education: I am homeschooled, so we don’t really have grades. If I went to school, I’d probably be in 7th grade.

Who do you live with? I live with my parents and 5 siblings. I have 2 indoor cats; 3 outdoor cats; 2 dogs; 4 goats; 2 pigs; and many chickens, geese and ducks.

What's a typical day for you? Everyday I read my Bible and pray. I do my school lessons and afterward I have free time to play with my dogs and cats or spend time reading or on my tablet. I enjoy reading romantic historical fiction and playing Minecraft. I am also in charge of doing the family laundry. With 6 kids in the family, there is always laundry going.

How long have you known you are living with FA? One year.

Are there any others with FA in your family? Yes; my 7 year old brother, JoJo.

What do you like to do to stay active and what type of exercises work for you to stay strong? I enjoy doing Just Dance with the Wii. I also enjoy short walks around the farm when the weather is nice. Our library is starting a weekly yoga class, and I’m excited to try that with my mom. 

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Teen Hangouts - February 2018

teen hangout feb 2018Join the FARA Ambassadors for a Google hangout for teenagers with FA. it is an hour-long web-based hang out. If you don't have ataxia, you are not allowed to participate in the hang out. There will also be two or three adult FARA Ambassadors present. The adults will be there just to help keep the conversation safe and going. We have themes for discussion, but they are just to give us a framework we don’t have to talk about the theme. Hopefully it is a way for you to connect with other people experiencing similar if not the same things as you.

The theme this month will be: What do you do for fun? Tell us about your hobbies, sports, books, movies, etc.

When: Thursday, February 22nd @8-9PM ET  -or- Saturday, February 24th @2-3PM EST. (The hangout opens 30 minutes early to try to work out technical issues, please remember we are volunteers not IT professionals, come early if you've never attended a hangout before.)

Who: Teens ages 13 to 19 (Please note: all the teens will be together this month, but we plan to host separate hangouts for young and older teens in the future.)

Where: On Google hangouts so if you have access to the Internet and speakers
and a camera on your device, you can come!

How: You need to get your parents or guardian to sign a consent form (click HERE). This should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. Additionally, they can get a consent form here if they need to. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout. Please note: if you have a free Google Plus account it makes it easier for us to invite you and make sure you get the invitation so, we recommend (not require!) getting one.

Please send an email to either address if you have questions!

See you soon!

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