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FARAFARA Cure FA

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

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!


 

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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The Walker Family

Kate 2Name: Kate Walker

Age: 15

Where do you call home? North Louisiana

Education: 10th grade

Who do you live with? I live with my parents, Rachel and Jason, and my dog, Ellie Mae.

What's a typical day for you? Since it is summer right now, my routine is different than it would be during the school year. I usually wake up around 9 or earlier and lay in bed for a while. I work on my website or my YouTube videos during the day. I try to find time to do some sort of exercises. Some days I spend time with friends, ride my trike, or watch TV. It depends on how tired I am that day. There are days I don't get out of bed much, but I try to keep myself motivated. 

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Lenny and Joe's Carousel

Lenny BlogHiring a good PCA is a hard thing to do, but two years ago I hired Robin Schreck who went to college around my town for nursing. While working for me, Robin quickly became a very good friend. I later found out that her family owned a local restaurant in Madison, Connecticut called Lenny and Joe's Fish Tale. Lenny and Joe's Fish Tale is known for their seafood and their outdoor carousel.

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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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