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In honor of Valentine's Day, let's talk about relationships! How does FA affect your relationships? Let's talk! This Hangout will be led by ambassadors Morgan L and RJ.
When: Tuesday, February 25th & Wednesday 26th at 8-9:30 pm EST. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month (except for holidays and the like) at 8-9:30 pm EST each of the two days.
Name: Glenn ter Borg
Age: 47 (born 1972)
Where do you call home? Katia and I live in Teresina, Piaui, Brazil
Education: Computer Sciences, 3D Animation, Graphic Design. Now retired from working as a video editor at a TV station, I'm planning to create short animations based on my own adventures!
I was born 27 laps around the sun ago in Sagittarius, the moon in Scorpio with a rising sign of Leo.. yeah, I kind of like astrology.
Can you tell?
I was born and raised in wonderful Colorado. Spending most of my childhood outside panning for gold, exploring mother nature, swimming & boating. I was diagnosed with Friedreich's Ataxia when I was 11 and coming from an active childhood as I had, I was quite devastated. As walking got harder and it was more noticeable that I was different, I just didn't do anything. I skipped school & never left the house. It wasn't until I was 17 at a family trip to Mount Rushmore when my uncle said, "You're either using this wheelchair I brought or staying in the truck." We ended up completing the Presidential Trail, 400+ stair hike around Mount Rushmore.. all in a wheelchair!
Name: Nadine Kleine
Age: 23
Where do you call home? Germany
What is a current goal you have with your education? I'm in med school right now, and I'm planning on working as a neurologist.
Who do you live with? I live on my own in an apartment.
How long have you known you are living with FA? I've known since April '19, but I've had symptoms for over six years, I just got misdiagnosed with Guillain-Barré's Syndrome, and it took very long to find out that it's FA.
Name: Lily Pierce
Age: 26
Where do you call home? The suburbs near Greensboro, NC
Education: I have a Bachelor's degree in English.
Who do you live with? I live in a big house with my fiancé, dad, mom, and brother.
What's a typical day for you? I work for a local newspaper part-time from home; I serve in volunteer roles through the United Methodist Church and in United Methodist Women (a women's mission organization in the church); and I blog at retrospectivelily.com. A typical day for me is a mixture of doing my paid job, doing things related to my volunteer roles, reading, writing, and attending meetings (ha!). I also devote a good chunk of time to working out...more on that below.
FARA Ambassador ProgramThe 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.
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.
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