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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!


Chrysanthi Zouva

brittany sommerfield Hi! My name is Chrysanthi, I am 37 years old and I come from Greece.

I was diagnosed with FA when I was 20, but I have been experiencing symptoms, such as instability, since I was 17. The diagnosis came relatively quick for me, but it was not an easy process. Between my anxiety about school at the time, and not showing any specific symptoms, it was hard to identify and diagnose the disease. After the diagnosis came, dealing with the disease itself was difficult. I started taking care of my physical health early on and I think that has helped me a lot because for many years I could walk and did not have to use a wheelchair. While I am currently using a wheelchair, I still make sure to stay active by doing hydrotherapy, physiotherapy, and I also love to exercise using a handbike. I believe exercise is key to all neuromuscular diseases and people’s general well-being as well.

FA Hangouts - April 2021

20210114_123951_0000 How do you make friends? Do you have friends who have FA?

Chat with Brittany and Camila about how FA affects friendships! April 27 & 28.

Maria Sobotka

Sandra Johnson Name: My name is Maria Sobotka. I don’t know why, but I’m called Mary.

Age: Older than 30, younger than 40.

Where do you call home? I live and work in my house, which is in Vienna, and I actually love it. But it’s too cold!

Education/Career: I have a master's degree in Tourism Management. Somehow I came to work in the energy sector, and now I am the Accessibility - and Health Manager in the Corporate Social Responsibility Team. And I love my work.

Who do you live with? I live alone - Thank God, because my apartment is really small. I have seven siblings in total, so celebrating Christmas is similar to a circus.

What’s a typical day for you? Usually, I wake up because my assistant prepares coffee! Then I start to work with my notebook on the kitchen table. As time flies by, I keep working meanwhile I get dressed or I get a shower or I take a nap or I work on my balcony. Then my assistant comes to prepare dinner. And I finish my day on the couch turning off my brain with Netflix.

María Mercedes Sebastián

brittany sommerfield My name is María Mercedes Sebastián , I’m 32 years old. I was born in Ecuador, but my parents and I are living in Madrid, Spain now. I studied administration and I also have an MBA, but actually I’m not working because working demands a lot of energy that unfortunately I don’t have at the moment.

I was diagnosed with FA in Madrid and everything was confirmed by genetic tests in 2008, so I’ve been living with FA for 13 years. I started using wheelchair when I was 25. I started to use it only in difficult situations, but as time went by I needed to use it permanently; I can’t imagine my life without my wheelchair.

Dr. Georg Herdt

Sandra Johnson Name: Dr. Georg Herdt

Age: 40

Where do you call home? Oxford, UK

Education/Career: PhD in Architecture

Who do you live with? I am married and have two lovely young children.

What’s a typical day for you? Get up super early, drink the first of many espresso. Breakfast with kids and do the nursery run. Depending on my availability I try to train as much as possible. After supper with the kids, my wife and I calm down and go to bed early to start getting ready for the next morning.

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