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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 info@curefa.org 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!


Paulin Roy

Roy Paulin Name: Paulin Roy Jr

Age: 38

Where do you call home? The city of lights… Paris (currently).

Education (degree(s): How will FA add to your future [career]?: After my scientific baccalaureate, I completed two trainings at the French national school of civil aviation: flight dispatcher (but it was hard to find job in airline after September 11, even after working few months at Air France) and senior technician in the study and operation of civil aviation, to work for the French Civil Aviation Administration. It requires a lot of constant arrangements to continue working with the evolution of the disease (wheelchair of course but also hearing, slowness, etc.), and a lot of goodwill from the employer.

Who do you live with? My wife and my five years old daughter.

What's a typical day for you? I have a few typical days, but mainly two: at the office and telework. The aim is the same (do my job), but at home I don’t have to be well-dressed, to be right on-time for transportation, and it’s more interesting for me because I don’t lose time for example to go to the company, restaurant, in the elevators... This allows me to schedule my physiotherapy sessions during meals and to pick up my daughter from school (which I cannot do on days at the office).

Brian Haffey Jr

Brian Haffey Jr Name: Brian Haffey Jr

Age: 36

Where do you call home? Long Island, NY.

Education: Bachelors in Accounting. In the middle of CPA Exams (passed 2, took 3rd on Monday, if passed, I have one left).

Who do you live with? My girlfriend

What do you do for a living? Work remotely. In April of 2020, I started my own bookkeeping company.

Jacob Thompson

Jacob ThompsonName: Jacob Thompson

Age: 28

Where do you call home? Minneapolis, Minnesota

Education (degree(s): How will FA add to your future [career]?: B.S. in ESL education and M.A. in Ministry from Bethel Seminary - FA influences my career as a minister, author, speaker, and recording artist. It allows me to empathize with those who are suffering and motivates me to raise awareness and resources for FA and other rare diseases.

Who do you live with? I am married to my amazing, beautiful wife, Abigail Thompson. We have two boys: Titus - 2 years and Griffin - 8 months.

What's typical day for you? I work as the Pastor of Student Ministries at City Church in Minneapolis. I run programs to mentor the teens and coach basketball. Meanwhile I work on writing, speaking, and recording music and spoken word poetry. I try to stay active and I ride my Catrike 700 as much as possible. I love spending time with my wife and children, family, and friends.

Angelina Ritschel

Angelina Ritschel Name: Angelina Ritschel

Age: 19

Where do you call home? Delaware

Education (degree(s): How will FA add to your future [career]?: I've graduated high school and am working on getting my bachelor's in philosophy and criminal justice. I do have a minor in French too, but I don't think they give a degree for that. I hope to attend graduate school and maybe get a PhD after that, but I don't know if I want to do more schoolwork. I think FA will get in the way of my future career, as it does now during school, but I'll figure that out when the future career comes closer.

Who do you live with? I live in a dorm with live-ins.

What's typical day for you? When I'm on campus, I wake up usually an hour before I leave for class. I eat, make tea, brush my teeth, use mouthwash, get dressed, and go to class. After class I eat lunch and watch Netflix; sometimes I do homework in-between and then go to my last class. After, it's the usual: eat, do homework, get a shower, then sleep. For when I'm home, I wake up (usually around lunchtime), eat, watch Netflix, maybe get in the pool, eat, shower, sleep.

Molly Lawson

Molly Lawson Name: Molly Lawson

Age: 25

Where do you call home? Arizona

Education (degree(s): How will FA add to your future [career]?: I graduated in 2018 with a bachelor's degree in Human and Family Development and a Masters of Social Work in 2020. FA has impacted my career choice because it narrowed the jobs I was capable of performing. Fortunately, I’ve always wanted to be a social worker.

Who do you live with? Up until recently, I lived independently. However, a few months ago, my mom moved into my apartment.

What's typical day for you? It really depends on the day. But typically I wake up at 6 AM, and my caregiver helps me get ready for the day. From there, I drive to work. (As a side note, I learned to drive in 2017 with the assistance and education from Driving to Independence. Shortly after that, I bought my own car. I have been driving with minimal restrictions ever since. I love driving!) After work, I might go to physical therapy or go see my friends. At the end of the day, my caregiver comes back and helps me get ready for bed.


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