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Megan Leeper

MeganHello! My name is Megan Leeper.


I live in the north Texas area, and I was diagnosed with FA at 19. I always thought that I was just a little clumsy growing up but found out it was all because of FA. I am currently studying Forensic Psychology online from SNHU and hope to be able to travel globally when I finish my degree.

March FA Hangout 2020

March HangoutThe FARA Ambassador Program presents an FA Hangout talking about: How you stay healthy! Lake and Brittany are leading the discussion. Do you exercise? What do you eat? Let's talk!

When: Tuesday, March 24th and Wednesday, March 25th at 8-9:30 PM EST (Hangouts will be the last consecutive Tuesday and Wednesday of the month, except on holidays and the like) at 8-9:30 PM EST

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.

Seth Holm

SethHey there, hi there, ho there! My name is Seth Holm. I'm from Minnesota and am a quarter of a century-old! Currently, I tutor in elementary, middle school and high school math. I'm also preparing to go to school in the fall for accounting to become a CPA. I was diagnosed with FA at the same time as my sister in 2015 just weeks after my 21st birthday.

When I was first diagnosed, things seemed pretty grim and it was as if the world was conspiring against me. But the moment I learned acceptance and started conversing with others in the FAmily, everything got so much brighter. That's why I joined the Ambassador Program, not only for myself but to be that positive light in recently diagnosed persons' lives. To show that this isn't the end of the world, but the beginning of a new one blessed with opportunities of strength, fortitude and empathy. We can still do anything we set our minds to; it'll just take a little more patience and a little less
negativity. The only thing more pointless than the Oxford comma is pessimism.

Andressa Ayres Pelanda

Andressa 6Name: Andressa Ayres Pelanda

Age: 35 years old

Where do you call home? I live in a seaside city called Pontal do Sul, in the state of Paraná, south of Brazil.

Education: I have a degree in Oceanography and postgraduate in pedagogical yoga and neuro-learning.

Who do you live with? I have lived with my partner for almost four years, and we have a two-year-old daughter.

Keith O’Brien

Keith OBrienHey everyone! I'm Keith, and I live on the Jersey Shore. I was diagnosed at about 12 years old alongside my older brother, who was a High School Junior. I was active in the community at the beginning, but life got in the way for a few years. Now I'm back and more excited than ever to be a part of it!

I look forward to all of the unique people, I'll be able to meet and befriend through my ambassadorship. You'll usually find me making music or fishing, and you'll always be welcome to join me at either!

Subcategories

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!


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