Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

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

Subscribe to the Ambassabors Blog

Get new posts from the Ambassadors Blog sent directly to your inbox


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!


 

Megan Leeper

Megan LeeperName: Megan Leeper

Age: 21

Where do you call home? Burleson, Texas. The DFW area.

What is a current goal you have with your education? I am working on getting a bachelor's degree in psychology with a focus in forensics.

What is your relationship status? I currently live with me parents and two dogs.

What's a typical day for you? A typical day for me is pretty laid back, since my schooling is now online. Physical Therapy is twice a week, and because I struggle with fatigue, I am mostly a homebody.

How long have you known you are living with FA? I found out I had FA after a nerve biopsy. Every doctor struggled with figuring out what was wrong. My genetics were examined to confirm FA.

Add a comment
Read more: Megan Leeper

Lindsay Ashman

Lindsay AName: Lindsay Ashman


Age: I am 39 years old!!


Where do you call home? I was born and raised in Savannah, Georgia.

Education: I earned an English degree from Armstrong State University on Round 2 of college when I was 34 years old. (Round 1 was right after high school and before the FA diagnosis - mobility was my only obstacle, but it was a huge deterrent.)

Who do you live with? I have a 17 year old son, no wedding ring and no apologies. My son and I have lived on our own for six and a half years.

What's a typical day for you? I feel like I live at the grocery store! Really though, I am a freelance writer who is always looking for an interesting story. I spend my days working on something that may or may not be bought. I must be an optimist after all. (wink)

Add a comment
Read more: Lindsay Ashman

Seth Holm

Seth HName: Seth Holm

Age: 25

Where do you live? St. Paul, MN

Work/Education: Beginning school in Spring 2020 to work towards an Accounting degree

Who do you live with? I am currently single, I live with my parents and little sister.

How long have you known you are living with FA? I was diagnosed when I was 21 years old at Mayo Clinic in Rochester, MN, so about four years ago. I had symptoms for a half dozen years prior, but balance and coordination had significantly gone downhill by that point in time. It felt good to know why I'd struggled in sports, exercise and simply participating in activities my friends did.

Add a comment
Read more: Seth Holm

September FA Teen Hangout 2019

September 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. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going. September's hangout will be led by FARA Ambassador Jean Walsh.

The theme will be: Scary Movies. Do you like or hate them? Do you like to watch them at the theater or at home? Did you spill the popcorn when something scary happened? 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!

Add a comment
Read more: September FA Teen Hangout 2019

Neal Ramer

Neal RamerName: Neal Ramer

Age: 41

Where do you call home? Tippecanoe, IN

Education degree(s): 8th grade

Do you have children? No

What's a typical day for you? Typically, I sleep, eat, take care of my dogs, eat, sleep... rinse, repeat. I am a dog breeder.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed at 18 with Charcot-Marie Tooth (CMT) because there was no genetic test. Then when I was 23, I was correctly diagnosed with FA by a blood test.

Add a comment
Read more: Neal Ramer
Page 1 of 105

SHARE

FacebookTwitterLinkedInYoutube
Event A.jpg

 

Archived in
  the Ambassador Blog