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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!


 

January FA Hangout 2019

January HangoutBrittany Sommerfield and Noelle Bouchard are going to host this month's hangout. The topic for discussion is what are your plans for 2019.

When: January 29th & 30th. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30pm EST each of the two days.

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.

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Read more: January FA Hangout 2019

The Venter's

CheneName Chene Venter

Age 19

Where do you call home? Western Cape, South Africa

Education (degree(s): I am of high-school age, and interested in becoming a book editor (proofreader).

What is your relationship status? I live with my mom and my twin sister. I have two more sisters and a brother.

What's a typical day for you? A typical day for me is rolling down to the beach with my twin sister and my dog. I also like to exercise during the day (yoga, cycling). My sister and I also have parallel walking bars.

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Barry Risinger

Barry RisingerName: Barry Risinger jr

Age: 37

Where do you call home? The first state capital of Ohio.

Education (degree(s): G.E.D., 3 years of schooling for different art degrees.

What is your relationship status? I'm currently in a relationship with another FA'er. I have 15yr old daughter who has no sign of having FA. I currently share a place with my mom.

What's a typical day for you? I normally wake up take my vitamins and medicine then make a smoothie. After that, my day is filled with drawing, playing games, listening to music, and content creation.

How long have you known you are living with FA? It took me 10 years to get a definite diagnosis. I have had symptoms since I was 13.

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The Dürr Family

Leila DurrName: Leila Dürr

Age: 14

Where do you call home? Pretoria, South-Africa

Education: 8th grade in Afrikaans Hoër Meisies Skool (An all-girls school)

Who do you live with? I live with my parents and my little brother Simon. We also have a big animal family at home.

What's a typical day for you? I go to school with my wheelchair or my walker and when I get to school I switch to my scooter. That's how I get to my classes. After school, I go home and do homework. Then I relax a bit by watching Youtube or reading a book. During the exams, I go to my friend's house to study when we have finished writing for the day.

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Read more: The Dürr Family

December FA Hangout 2018

December HangoutThis month's hangout will be led by Jake Tompkins and Erin O'Neil. We are going to talk about the holidays coming up. Positive or negative, Let's talk about it. 

At FA Hangouts we laugh, we connect, we hang out, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

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Read more: December FA Hangout 2018
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