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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!


 

Denise Lenhart

Denise 3Name: Denise Lenhart


Age: 43


Where do you call home? Ankeny, Iowa


Education: I did some college but no degree.


What is your relationship status? Do you have children? I have been married for 20 years and our daughter is almost 21(that makes me feel old!) We also have 3 fur babies, cats, who are good company for me but only when they feel like it!

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Carolin Benesch (Caro)

Carolin 4Name: Carolin Benesch (Caro)

Age: 27

Where do you call home? Münster, Germany

Career: After school, I started working for a travel agency, taking a licensing exam. I worked there until 2016. Since 2017, I'm not working to have enough time for all my therapies and sports because of this disease.

Who do you live with? I'm a single girl and live alone in my beautiful flat.

What's a typical day for you? My day normally starts at 9 am with a short but powerful breakfast at home. (Meals are very important!) Every day, I have therapy. I do physiotherapy once a week, speech therapy twice a week, I meet with a psychiatrist once a month, and I spend 1-2 hours with my personal trainer every week. In the evening, I often meet friends or my sisters, who live close to me.

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Read more: Carolin Benesch (Caro)

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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