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Jennifer Garner

JenniferName: Jennifer Gasner

Age: 47

Where do you call home? ​San Diego, California

Education degree(s): BA in English, MS in Recreation

Who do you live with? I live with my boyfriend.

How long have you known you are living with FA? ​I was diagnosed at 17 in 1990 after a year by two doctors. It was before the blood test existed, but when the test was available, ten years later, it was confirmed.

Are there any others with FA in your family? No

Lily Kate King

Screen Shot 2020 04 23 at 10.17.23 AMName: Lilly Kate King

Age: 16

Where do you call home? My home is Winnsboro, Louisiana, which is in the northeast part of the state.

Education: I am a sophomore at Franklin Parish High School, where I am an honor student.

Sophia Sieber-Davis

SophiaMy name is Sophia. I'm a 29-year-old artist living in Northern California with my partner and our two young sons.

I was diagnosed with Friedreich's Ataxia at 13, though I noticed I couldn't keep up with the physical activities of my peers early in life. At 14, having just entered high school and the most awkward time of life, I struggled to maintain focus and calm in navigating through crowded hallways. I remember how much mental power it took to keep my gait steady. This was the point when I convinced my best friend to get her nose pierced with me; I wanted something I could concentrate on while I walked. No, it didn't make me cross-eyed- just being able to see its faint sparkle in front of my face gave me confidence and a sense of safety. It still does.

April FA Hangout 2020

April HangoutThe FARA Ambassador Program presents an FA Hangout asking: What have you been doing lately? Morgan T and Allison B are leading the discussion. Take a break from social isolation and catch up with us online! April 28th and 29th!

At FA Hangouts, we laugh, we connect, we hangout, 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!

Every Hangout is open to anyone 18+ with FA and a translator if needed for hearing or speech difficulties. (mark your calendars, FA Hangouts will be the last consecutive Tuesday and Wednesday of the month, except on holidays and the like) at 8-9:30 PM EST

April Teen Hangout 2020

April Teen hangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going. FARA Ambassador Kyle Waterman will lead April's hangout.

The theme will be: "FARA Events" a place to find friends, fun, and community. Have you been to an event, tell us how it went. Thinking about going to an event? Learn what other teens think. Learn how to find an event near you. Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

Subcategories

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!


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