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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!


 

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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Read more: FA Teen Hangout July 2018

Gavin Oldaker

Gavin MTCName: Gavin Oldaker

Age: 29

Where do you call home? Western Washington

What is your education? What are your plans for the future? I finished a general Associate's a few years ago. I have a couple certificates in AutoCAD... When I'm cured, I'd love to major in Architecture, while minoring in Acting. Until then, I write here and there. Fiction. Nothing solid yet, but I'd love to put out something in my time waiting.

Who do you live with? I'm single, but I would love to find myself in a relationship. Right now, I live alone. My parents help me out with rent. It's pretty cool. Although it's a lot of work; nearly too much, and it's lonely sometimes.

What's a typical day for you? My typical daily routine involves reading, getting to the gym, watching TV/playing Xbox and cleaning. It seems I'm constantly cleaning. Those are the nuts and bolts of my routine anyway.

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Read more: Gavin Oldaker

Patient Perspective: Antonio's Experience Participating in a Clinical Trial

Antonio blogMy name is Antonio Calmon. I am 41 years old and have been diagnosed with Friedreich's Ataxia for 4 1/2 years.  I live in Brazil but was fortunate enough to learn about FARA, its amazing team, and community soon after my diagnosis. It was like a torch shedding light on my way. I was able to participate in the FA Symposium and there I could learn about how the research process works, the clinical trials possibilities and about the amazing FA family. Since then my ties with my new family have gotten stronger, and I could even see many of my new friends at the Symposium again last year. This is a kind of event I want to attend as long as it is possible!

The beauty of science and daily dedication of scientists and staff engaged in the fight for treatment/cure is really amazing. At the same time that I admire all the work those people do, I also realize that us, patients, can also give a boost to research by participating in FARA's Global Registry. This is a simple thing to do: we just need to give them all the information that helps enhance medical knowledge of the disease and positively influences the course of research. There are many studies in line and my great fear is that the number of FAers enlisted won't be enough to supply the need for a large number of available volunteers for clinical trials. The best and faster way to find them is through the Global Registry but it seems that the FA patients global community hasn't realized yet about the power they have at reach to make clinical trials and, of course, treatment available in a faster pace.

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Read more: Patient Perspective: Antonio's Experience Participating in a Clinical Trial

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)
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