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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!


 

Oktoberfest Party for FARA

FARAoktoberfest“Oktoberfest Party for FARA” was organized by Randy Sisulak and Bill Sabia as an addition to the Claxton Classic Golf Tournament.

Beer lovers gathered together to raise funds for FARA on September 10th. This was the second year FARA was the beneficiary of the Baltimore Leinenkugel Beer Garden, the only Leinenkugel Beer Garden in the country. For a $5 donation, guests enjoyed discounted food and drinks, participation in raffles, door prizes and drawings.

This year, $600 was raised and 100% of those funds will go directly to FARA. Randy says, “Although this event is not a big money maker, it is an opportunity for folks to gather in a relaxed atmosphere and ‘just hang out’ while raising a donation and awareness for FARA. Introducing folks to each other who have a common interest in FARA is the highlight of the event.” 

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FA Hangouts - October 2016

The FARA Ambassador Program presents an FA Hangout talking about: tattoos. Do you have a tattoo? What does it symbolize? Do you want a tattoo? If so, what is the story behind what you want? Do you hate tattoos, if so why?

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.

When: Hangouts will be held Tuesday October 25th, Wednesday October 26th and Thursday October 27th (mark your calendars, FA Hangouts will be the last 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. 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.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

See you soon!

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2016 FARA Energy Ball

eb2016af1I’d first like to admit that I’ve been struggling to write this blog post for a week… How can I convey all the exciting progress presented at the USF Symposium and the warm support shared at the FARA Energy Ball? In short – I can’t. Words and pictures on a website can’t do justice to the surreal experiences I shared last week in Tampa, Florida. So rather than try to capture all the emotions of those three days, I will report on the scientific progress (for those that missed the live stream video), and describe the basic flow of the weekend, in hopes that it will inspire others to attend next year.

We began the symposium with Dr. Judy Genshaft, President of USF, welcoming everyone to Bull country and reminding us of USF’s commitment to developing a cure for FA. Then Dr. Zesiewicz (Dr. Z!) of the USF Ataxia Research Center provided a quick overview of major clinical trial results over the past year. At previous symposiums, this is where researchers would speak about results in their own labs but… Surprise! …the patients stole the show. Alison Avery, Anna Gordon, Sean Baumstark, and myself took the spotlight to talk about our experiences participating in research studies and clinical trials. There were some laughs, some tears, a few on-stage selfies, and always a great perspective into different journeys living with FA – we made sure the audience got what they paid for! (Which was nothing since the symposium was free and open to the public!) But our stories only tell half the story… Kyle Bryant joined us on-stage to moderate open discussion with key researchers and clinicians working on FA research and developing potential treatments. These discussions were split into four 15 minute sessions, which deserve a description below: 

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FA Hangouts - September 2016

The FARA Ambassador Program presents an FA Hangout talking about: What works when working? Have you worked with FA? What was your favorite job and why? Didn't work but want to learn more? Come and ask questions! (yes we had a similar theme before but it has been a while, update everyone or come this time if you missed it)

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.

Hangouts will be held Tuesday September 27th, Wednesday September 28th and Thursday September 29th (mark your calendars, FA Hangouts will be the last Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST all three days. More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity. 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. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.  Add a comment

Read more: FA Hangouts - September 2016

2016 Fuzzy Buzzy Golf Tournament

FuzzyBuzzy2016 1

Once again, my favorite day of the year, the Annual Fuzzy Buzzy Golf Tournament. This year was extra special because my Uncle Paul, aka Buzzy, has been running this tournament for 30 years! The tournament began in 1986 with a few guys having some fun and playing golf. As the years passed Paul wanted to put some meaning behind the tournament. He decided to make the Fuzzy Buzzy a charity event to raise money for the Friedreich's Ataxia Research Alliance. The first year about 50 players raised $2,400 for FARA. This year, the 13th year, we had 130 golfers and raised $18,000!! 

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