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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!


 

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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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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Christina Cordaro and Catherine Logan

Logan Siblings 2Name: Christina Cordaro

Age: 28

Where do you call home? I've lived in Philadelphia, PA, for the past 7 years, but I am from Bucks County, PA.

Education: I have received my Master of Business Administration in Hospitality Management and Bachelor's Degree in Hotel & Lodging Management, both from Johnson & Wales University. I currently work at The Bellevue Hotel, in the Unbound Collection by Hyatt. My career goal is to be a Director of Revenue Management.

What is your relationship status? I recently got married this past October to my husband, Justin! My immediate family includes my dad, mom, sister, Catherine (32) and brother, Matthew (17).

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