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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!


 

16th Annual Claxton Classic Wing Party

ClaxtonClassicWingPartyJuly 14, 2016 was our “16th Annual Wing Party” with Hooters. The event was held at the Laurel, MD Hooters instead of the usual Baltimore Inner Harbor Hooters. We made the switch for several reasons but one major reason was the planned total renovation of the Baltimore Hooters. They are planning to move to a new location and do some major renovations so we did not want to get caught up in all of that!

We had a great time with about 70 in attendance including Erin Kiernan (FA patient), and Ron Bartek of FARA. We raised $1,000 for FARA! 

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Read more: 16th Annual Claxton Classic Wing Party

FA Hangouts - July 2016

The FARA Ambassador Program presents an FA Hangout talking about a few of your Favorite things: the book and movie edition. What do we have to see/read. What made you laugh, cry, think, or take action. Tell us what our next good read/view is!

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 Wednesday July 27th and Thursday July 28th (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at (new time) 8-9:30 PM EST both days (just one hangout per night, but it is longer). 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. 

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Curtain Call for a Cure

Over the past several months, students from South Dakota have been working on a project called Fine Arts for Friedreich’s Ataxia or “FA for FA.” FA for FA is an entirely student created and run organization that has partnered with several local businesses to raise money and awareness for FA.

The idea for this project began with a high school freshman named Raena Brendtro, a fellow musical theater performer in Sioux Falls, SD. Raena was diagnosed with Friedreich’s Ataxia (FA) on May 30, 2013.

FAforFA CurtainCallforaCURE

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Research Labs and Hope in North Carolina

At the beginning of June, I was invited to tag along with Jen Farmer and a couple other representatives from FARA and the FA community as they toured two research facilities in North Carolina. Both of these labs were looking at how they could benefit FA patients, but in different ways. Heads up, I dropped a major in college because it required a science class! So I’ll dumb it down and let Jen fill in my gaps!

Tuesday, June 7: Bamboo Therapeutics in Chapel Hill, NC 

Mary Jen Bamboo June

Mary: This place is 5 minutes from me and I didn’t know it! Bamboo is working on gene therapy for FA, Duchenne, and a couple other conditions. They are creating viruses to deliver a correct copy of the FA gene to the cells most important in FA - nervous system and heart.They are expanding their lab so they can do this in a higher capacity. The people there were awesome! They asked us questions about our priorities for treatment so that they can work to address the real concerns in the FA community. They also asked how we feel about risk, and I said no one with FA is scared of big needles and a little blood! I’m going to keep up with this place, so I’ll report back with any cool developments

Jen: Dr. Jude Samulski is a founder of Bamboo Therapeutics and a leader in the gene therapy field because of his expertise in discovering and optimizing viruses that can be used for gene therapy. Dr. Samulski explained to us how they are optimizing the AAV virus to enhance the specificity of AAV to target organs and tissues, as well as improve the efficiency of transduction of potential therapeutic genes (frataxin in FA) into host cells. We were also given an amazing tour of their new manufacturing facility and got an upclose look at how they are planning to scale up their production with new bioreactors. As Mary mentioned we also talked with the team about symptoms of FA that are important to treat (balance, coordination, speech, vision, hearing, fatigue and cardiac disease) and what types of procedures people might be able to tolerate related to delivery of a therapy. As this was a first meeting, I see this as the very beginning of more conversations as these are important issues that we want to discuss with the wider FA community. 

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Read more: Research Labs and Hope in North Carolina
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