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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!


Jacob Thompson

Jacob Thompson Name: 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.

 

Kristina Schaoni

Kristina Schaoni Name: Kristina Schaoni

Age: 31

Where do you call home? Lübeck, Germany

Education (degree(s): How will FA add to your future [career]?: I have finished secondary school and after school I finished an education as a technical product designer. It’s been 7 years since I am not working, but working is my second goal for now.

Who do you live with? Right now I live with my mother and my brother but I have found an apartment and I will move as soon as I find assistants.

What's typical day for you? Most of my days are not similar.

 

FA Hangouts - December 2021

20211219_185743_0000 2022 is coming so soon! Do you have any plans for the end of the year? Any good New Year's resolutions? Come hang out with RJ and Jacob December 29, 8-930 PM EST.

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