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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail if you would like to be interviewed for a Meet the Community post.

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!

Madelyn Frederick

MadelynName Madelyn Frederick

Age 19

Where do you call home? I was born and raised in Dallas, Texas and still live there.

Education: Ever since I was little I had dreams of becoming a teacher. When I was diagnosed with FA, I didn't think I would be able to achieve that dream. I knew it would be physically and mentally difficult but I am gonna do it. I am currently attending Collin College to get my degree in education.

What is your relationship status? I am currently a single, college student who lives with her parents and brother. I have an aspiring YouTube channel and am way too obsessed with blue bell peanut butter cookie dough ice cream. I have 2 older sisters and they both have some very adorable children. My brother is a senior in high school and wants to play baseball in college.

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Kolby Draper

Kolby Draper 2Name: Kolby Draper

Age: 23

Where do you call home? I live in a small town in central Florida named Bartow.

Education/Degree(s); What is a current goal you have with your education? How will FA add to your future[career]? I currently only have a high school diploma, I went to Welch College in Nashville right after graduating but had a fall which resulted in a knee injury so I had to come home and could not complete any classes there. I have taken a few classes locally when I have been able to. I would love to and maybe one day plan to get a degree in Theology and another in Architecture, combining them to plant churches, build homes, orphanages, schools, and hospitals both locally and abroad. FA is holding me back from that but if (scratch that, when) a cure is found, that's what I want to do long term.

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Marion Brossier

MarionName: Marion Brossier

Age: 24

Where do you call home? Bordeaux, France

Education: I have a degree in corporate management with a concentration in finance [STG (Science Technique et Gestion) option CFE (Comptabilité et Finances des Entreprises)], a license in trilingual communications [BTS (Brevet de Technicien Supérieur) AM (Assistante de Manager)], a certificate in accounting and administration [ASCA (ASsistante de Comptabilité et d'Administration)], and a certificate in European studies [PCIE (Passeport de Compétence Informatique Européen)].

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Alison Avery

Alison 2Name: Alison Avery

Age: I am 24

Where do you call home? I was born and raised in Tampa, FL. I've lived in North Carolina and New York City, but currently call Tampa home.

Education: I graduated from Elon University in May of 2016 with a bachelor's degree in Human Services Studies and minors in Business Administration, Psychology and Early Childhood Education.

How long have you known you are living with FA? I first had symptoms of FA when I was 15 and in high school. We were able to diagnose it very quickly because my sister also has FA and was diagnosed prior to me.

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Naomi Houghton

NaomiName Naomi Houghton

Age 24

Where do you call home? British Columbia, Canada

Education: I have a diploma in Occupational Therapist Assistant & Physiotherapist Assistant, FA will ultimately render me unable to perform my job as a rehabilitation assistant, but for now it has allowed me to build better rapport with my clients. I can now relate to their struggles and offer encouragement to them from a genuinely understanding place.

What is your relationship status? I live with my two best friends and greatest supports: Michael, my common-law partner, and Memphis, my Teacup Yorkie.

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