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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!


FARA Teen Hangouts - March 2021

Teen Hangout 3-13-2021 Saturday, 3/13 1-2 PM ET

Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. (If you don't have ataxia, you are not allowed to participate in the hangout.) There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

This month, we will be talking about self-care. What does self-care look like for you? How do you feel after you practice self-care? Let’s talk… Maybe one of your ataxia friends just needs to hear what you do because it is a great way for them to practice self-care too.

Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation…the theme gets us going, but we definitely don't stick to it! It isn't counseling.

When: Saturday, March 13th, 1-2 PM ET
(The hangout opens 15 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 on Zoom before.)
Who: Teens with ataxia ages 13 to 19 (Please note: all the teens will be together)
Where: On Zoom so if you have access to the internet, 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 download and sign this consent form. Once signed, this should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. If you already have a signed consent form, no need to get a new one! The signed form is good until the signer revokes it. 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 Zoom.

18 and over: just let us know that you want to come by emailing us at farateenhangouts@gmail.com or jeantw62@gmail.com A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom.

Been before? If you already have permission or you're 18+, Jean Walsh will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don't get one, email Jean at jeantw62@gmail.com.

Pop an email to either address if you have questions!

Sajmir Pjetri

Sajmir-Pjetri Name: Sajmir Pjetri

Age: 29

Where do you call home? Burrel, Albania

Education/Career: I finished high school

Who do you live with? I live with my parents and brother. I have 3 brothers and 1 sister. 2 brothers and my sister live abroad. They are all married and blessed with children. I am a lucky and happy uncle.

What’s a typical day for you? I try to do daily exercises, read books, watch movies and play chess.

Molly Lawson

Molly LawsonHi there! My name is Molly. A little bit about me: I am 24 years old, and I just graduated with my Master’s degree in social work.

I was diagnosed with Friedreich’s Ataxia at 10 years old. FA is different for everyone, but I would say my progression is on the slower side compared to how quickly FA can progress. I was walking independently until the age of 18, when I started using a walker. At the age of 19, I used a wheelchair when I was out and about and a walker at home. When I was 21, I got a power chair to assist me to tackle long distances. At the time, I was living alone so I didn’t have much help for the day-to-day living.

Now that I am 24, I pretty much use my manual chair or my power chair to get by. I go to physical therapy twice a week, and there I walk with a walker, but walking by myself is dangerous. I also have a roommate now, but I still take care of daily living activities myself.

Max Corrigan

max-corrigan Name: Max Corrigan

Age: 19

Where do you call home? I am from Bristol in the U.K.

Education/Career: I have my math GCSE and I am working towards a Media degree, so I can work at home.

Who do you live with? I live with my mum, stepdad, and sister, but I would love to move out. I just need to be in the right situation first.

What’s a typical day for you? I wake up at about 6am and workout for a little while, then I do college work, edit or game in the afternoon, and finally shower late as I feel most confident with my walking ability.

María Mercedes Sebastián

maria-mercedes-sebastian Name: María Mercedes Sebastián

Age: 32

Where do you call home? I’m Ecuadorian, but my parents and I are living right now in Madrid, Spain.

Education/Career: 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 use my time to prepare my knowledge in other areas like how to be happy and feel near to God. In fact, I’m thinking about studying a new career with something to do with Religious Sciences, I have a couple of options but I don’t decide which one yet.

Who do you live with? I live with my parents, and I’m so thankful for them and me be their daughter because they are the best parents ever always thinking of me, willing to serve and help me.

What’s a typical day for you? A typical day for me is: I wake up like at 8am, then I start the day watching a YouTube video called 10 minutes with Jesus that is about the reading of the day of the Holy Scriptures (I really think that helps me to start my day in a better way). Then my father gives me my breakfast, and when I’m finished with my breakfast, my mother helps me to have a shower. My mom helps me to get dressed and when I’m ready, I exercise like for an hour and a half with my father (because I’m not going to physiotherapy because of the virus). I listen to some music, and like at 2pm my mom calls me to lunch. At 3 pm I start my prayers, (I can’t explain how much peace it gives me I feel that is the moment of the day where I rest). When I finish my prayers, I watch Masterchef Ecuador by YouTube and then some Catholic conversion testimonies and some predications. I eat dinner and finally I read the Scriptures and Catholic Cathesism, at 10pm I brush my teeth, then I say a short prayer and after everything I sleep.

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