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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!


 

Robert Rhodes

robert rhodes 3Name: Robert Rhodes

Age: 34

Where do you call home? Oklahoma City, Oklahoma

Education (degrees): Bachelor's of Science – Industrial Technology and Associate's of Applied Science – Computer-Aided Design

What is your relationship status? I'm single. I currently live with my parents, but I pay rent monthly. I also help around the house when I can.

What's a typical day for you? I am employed full-time as a mechanical engineer at a manufacturing plant that makes ball valves for the oil and gas industry; work five days – between 46 to 48 hours per week. My primary emphasis is CNC tooling and chuck jaw design, but I have experience in product and quality control engineering as well. My daily tasks often vary greatly. With a combined production floor of over 2 million square feet, I do a significant amount of manual labor - beyond office work. I have been with my employer for 9 ½ years.

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Jumpin' for Jazz Fundraiser Hit the High Notes

Jumpin for Jazz collageJune 10, 2018, marked a high point as music lovers and those fighting Friedreich's ataxia gathered at the Jazz Kitchen in Indianapolis. Several favorite artists—the Rob Dixon Trio, the Morris Kienle Duo and Fresh Water—donated their talents and delighted the crowd.

Dr. Mark Payne gave an update on his promising research, which is expected to go to the clinical trial phase soon.

Indianapolis Mayor Joe Hogsett had proclaimed June 10 as Jumpin' for Jazz Day, acknowledging what founder Virgil Harris and his daughter, Jazmyne, had set in motion to fund research and education on FA and support families dealing with the disease.

As important as the funds raised were the new friends recruited to the cause and the renewed sense of purpose that flowed through the Jazz Kitchen along with the skilled improvisations of the artists. To read more about Virgil Harris, Jumpin' for Jazz and his daughter Jazmyne Harris, click here usat.ly/2HZ8BwX.

 

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FA Teen Hangout June 2018

FA Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers with ataxia. 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.

This will be our third month of having Teen Hangouts lead by the teens themselves. Hannah Stacks (she also made our great graphic this month) will be our leader. The theme will be: Teens Being Teens/Life as a Teen.

When: Thursday, June 28th 8-9PM ET (the hangout opens 30 minutes early to try to work out technical issues, please remember we are volunteers, not IT professionals, come early if you've never attended a hangout before)

Who: Teens ages 13 to 19 (Please note: all the teens will be together this month, but we plan to host separate hangouts for young and older teens in the future.)

Where: On WebEx, so if you have access to the Internet and speakers and a camera on your device, you can come!

How: If you are under 18, you need to get your parents or guardian to sign a consent form (Click here). This should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. Additionally, they can get a consent form here if they need to. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on WebEx.

Pop an email to either address if you have questions!

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FA Hangout June 2018

FA HangoutsThis month's hangout will be led by RJ Mercure. The subject will be, "How has FA affected your career path."

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.

When: Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30 PM EDT each of the two days. Each meeting can host 15 people now!

How: Email fahangouts@gmail.com to sign up or ask questions. 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.

Hangouts will now be held on WebEx! You do not need an account. 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.

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Yasin Rehmanji

Yasin smilingName: Yasin Rehmanji

Age: Turning 15 soon

Where do you call home? Ontario, Canada

Education: almost finished Grade 9

Who do you live with? I live with my mom, dad and older brother (who is more of a bother). It is just the four of us in my house, but I have my grandparents, uncles, aunts, and cousins around too.

What's a typical day for you? On weekdays, I go to school, come home and do homework. On weekends, I do various activities depending on the time of the year; I go horseback riding in the fall and spring, swimming in the summer and do sit skiing in the winter.

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