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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!


 

FA Hangouts - March 2017

FAhangouts March2017The FARA Ambassador Program presents an FA Hangout talking about: your living situation and how/if FA has changed that. This discussion will run the gambit from the emotional to the practical. Do you live alone? With friends? With family? Does your living situation work for you? Are you supported enough? Too much? Can you get around your house independently? Etc.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held Tuesday March 28th, Wednesday March 29th, and Thursday March 30th (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else. 

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Read more: FA Hangouts - March 2017

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

LeahAlstin1It was 2001. I had just finished year 12 and applied to do Primary School teaching at Deakin University. Life was exciting! I was moving to Geelong, not far off turning 18, getting my licence…all those fun things that happen when you finish secondary school. During year 12 I had felt a little unsteady on my feet and luckily I had a thorough doctor.

Mum received the phone call with my diagnosis of Friedreich’s Ataxia (FA) from a neurologist in Melbourne. She told me, I cried a bit, and then got on with life. I received a place at uni, I moved out of home, I got my licence, I partied hard. FA wasn’t that bad.

I attended the FA clinic at Monash Medical Centre annually until I was about 22 and then emotionally, I couldn’t do it. I would sit in the waiting room and compare myself to others, analyse every question that doctors would ask me, and then go home and cry on and off for weeks. A few times I was asked to participate in clinical trials, but I said no. I didn’t want any more to do with FA than I had to. Selfish I know, but I thought that maybe if I blocked it out, it might go away. 

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Read more: Patient Perspective: Leah's Experience Participating in a Research Study

2017 FArm to Table

2017FarmtoTableAt the end of a wonderfully successful Farm to Table fundraising event, Ceron, the event hostess walked by and proclaimed, "I love humans." It was a fleeting moment, but Ceron is right. In my role at FARA, I get to see the best of humanity- a contagious energy that when faced with challenge surges back to meet and push against that challenge. It is an energy that shows itself in the form of a boy living with FA- Gavin- who though he falls, always gets back up. Gavin's energy inspires his Aunt Ceron and Uncle Donald to open their farm and their home to create a magical fundraising event. Ceron and Donald's generous spirit and energy draw in hardworking volunteers, talented Chefs, toiling farmers, gifted musicians, and generous supporters. This collection of awesome humans create a swell of energy in the form of over $30,000 raised for research and an overwhelming feeling that one is never alone in the face of hardship. Whenever I'm lucky enough to be in the presence of such energy, I am left awestruck and grateful. Thank you! I'll leave it to Ceron to recognize all of these awesome humans by name. ~Felicia DeRosa, FARA Program Director 

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9th Annual Anytime Fitness Charity Golf Scramble

2017AnytimeFitnessThe 9th Annual Anytime Fitness Charity Golf Scramble was March 11th 2017. Anytime Fitness was kind enough to invite FARA back again as one of the charities for the event. This event also benefits the Suncoast Animal League and a local friend battling Stage 4 cancer.

It was certainly a beautiful day for golf, about 76 degrees and not a cloud in the sky! We had 126 golfers in attendance and raised over $10,000. We began the day with Pickles Plus providing us a box sandwich lunch, which was delish! Once the announcements were made, National Anthem was sung, the players were on their way! 

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Read more: 9th Annual Anytime Fitness Charity Golf Scramble

2017 FARA/University of Iowa FA Patient Symposium

2017IowaSymposium 2Upon learning a FA Symposium would be just a state away we knew as a family we had to attend. Our daughter Mekayla had reached out to one of her friends that had never been to a symposium, and we were delighted Emma Joyce and her parents were able to also make it down.

The morning started out with a showing of “The Ataxian”, and it brought home so many different points. From Sean and Kyle experiencing physical struggles during the bike race and sheer exhaustion, to the passion of John and Mike (the other riders on the team) to make up time during the race. The movie showed from the bikers support crew, to the young families featured in the film, it’s a tight knit FAmily with one goal in mind. 

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Read more: 2017 FARA/University of Iowa FA Patient Symposium
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