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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.

August FA Hangout 2018

FA CribsThe August hang out will be led by Jake Tompkins. The topic will be "Cribs-FA edition." This is supposed to be our lighthearted take on the classic MTV show. Show us your space, whether through still photos or with your webcam you can share your space.

At FA Hangouts we laugh, we connect, we hang out, 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!

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FA Woodstock 2018

FA Woodstock 3My favorite FA event of the entire year is FA Woodstock. Now, I will admit that I am biased since FA Woodstock 2016 was my first FA event ever. Nevertheless, I am here to tell you about this phenomenal event that takes place every summer.

When you hear, "La Porte, Indiana," what do you think of? It probably isn't Woodstock, but it should be. FA Woodstock has tie-dye, camping, art, an unparalleled sense of unity and is 3 days of peace and music (the sound of rain, laughter, and wheelchairs rolling down the boardwalk). Though Jimi Hendrix does not attend and I have yet to see a Deadhead in attendance, Dr. Lynch is a spectacular substitution. And let's be honest, in the world of FA, Dr. Lynch is as cool as Jimi Hendrix. Each year, Dr. Lynch and his team attend FA Woodstock to collect blood and skin samples. (You'll have to forgive me. I have tried to be clever and find ways to compare FA Woodstock with Woodstock 1969, but for "blood and skin samples," I'm at a loss. Anyway...)

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Young Adult Representatives of RDLA Event

Yarr 3On Saturday, July 14, 2018, I went to Newport Beach to attend the Young Adult Representatives of Rare Disease Legislative Advocates (RDLA) event, who are a group ranging from 13-25 years old in the rare disease community. They call themselves YARR for short.  The event was about an hour and a half drive from my house. I'm 25, so I just made the cut.

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FA Hangout July 2018

July HangoutWhat opportunities has FA opened up for you? -  July's FA Hangout will be led by Lake Denk. The topic this month will be what opportunities has FA opened up for you? At FA Hangouts we laugh, we connect, we hang out, 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.

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FA Teen Hangout July 2018

FA Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. We are now hosting them on WebEx. If you had a hard time joining our Google Hangout, you aren't alone. We hope you'll try again on WebEx.

If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least three adults FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

The theme will be: So, college is in your future. Our guest speakers will be people with ataxia who are currently working towards their undergraduate degree and/or have recently finished their studies. We will be talking about: what to focus on? What not to worry about? What are some hacks for college life with ataxia? Bring your own questions too!!

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