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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: 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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Alex Merriam

AlexMerriam1Name: Alex Merriam

Age: 41

Where do you call home? Born and raised in the San Joaquin Valley, Central California.

Education (degree(s): Bachelors of Arts in criminal justice in 1999, and a Juris Doctorate in 2004.

How does FA affect your career? So far, FA has had no effect on my career goals other than to make me more driven to success. I am the managing attorney of the local law office of a statewide law firm.

What is your relationship status? I married my high school sweetheart. We met when we were both 17 years old. We will celebrate our 20th anniversary in June. Do you have children? Yes, I have three amazing children ages 6, 8, and 10.

What's a typical day for you? I am a typical attorney who some may call a workaholic. I get up at about 5 AM so I can be to work by 6:30 AM, and then I leave work 12 hours later at approximately 6:30 PM. I certainly enjoy my work or I would not spend so much of my time doing it. The law is an excellent profession for anyone living with FA. I have been able to complete and, in fact excel in my position as an attorney. Since this is a profession of the mind and not the body, the playing field has been leveled.

How long have you known you are living with FA? I was diagnosed by DNA test when I was 24 years old. Therefore, I have been living with FA for about 16 years. I did not show any symptoms until I was 22 years old in law school, when I first started noticing that I had to concentrate in order to walk straight down a hallway or walk on a sidewalk curb. It was so slight that I thought it was all in my head. I then started feeling dizzy and off balance so I thought it was an inner ear problem. I went to many doctors and had many different tests performed. I finally visited a neurologist in Loma Linda, CA who knew right away that I had some sort of ataxia. He then ordered the DNA test. I was diagnosed in 2002. I was able to continue to participate in my usual activities until approximately 5 years ago. I then started falling which led to multiple serious injuries requiring multiple surgeries. 

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Mindaugas Tiscenka

MindaugusT1Name: Mindaugas Tiscenka

Age: 28

Where do you call home? Siauliai, Lithuania, Europe.

Education (degree[s]): Business Administration Bachelor's Degree

What is your relationship status? Single. Do you have children? No

What's a typical day for you? Wake up, do exercises, go to work, enjoy life.

How long have you known you are living with FA? It started when I was 16. Now I have now lived with FA for 12 years.

Are there any others with FA in your family? No. 

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