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!


 

June FA Hangout 2019

June HangoutThis month's topic is, "What do you do to defy your disability?" It will be led by Jake Tompkins and co-led by Justin B. Come hang out!

When: Join us on June 25th or the 26th at 8-9:30pm. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30pm EST each of the two days.

Read more: June FA Hangout 2019

Angelo Bonarrigo Jr.

AngeloName: Angelo Bonarrigo Jr.

Age: 49

Where do you call home? Palm Bay, FL

Education: BS-Accounting, University of Central FL, 1991

Who do you live with? Married 17yrs with 3 children none w/FA

What's a typical day for you? Work full-time M-F, weekends, yard work, church, and soccer games for the kids, thrift shopping, etc.

How long have you known you are living with FA? I was correctly diagnosed in 2003 after being incorrectly diagnosed in 2000 with Cerebellum Atrophy.

Add a comment
Read more: Angelo Bonarrigo Jr.

Morgan Talevich

Morgan THey guys! My name is Morgan Talevich and I am from Louisiana. I am 30 years old and I was diagnosed with FA when I was only 6. Since then I have had many ups and downs but I choose to focus more on the ups. I have an amazing, loving husband and 2 beautiful children. Aaannddd I received these wonderful gifts long after I was diagnosed.

Add a comment
Read more: Morgan Talevich

Kyle Waterman

Kyle WatermanHi! My name is Kyle Waterman and I'm 21 years old. I live in Cedar Rapids, IA and I'm currently in college at the University of Northern Iowa studying Statistics and Coaching. When I was 11, I was diagnosed with Friedreich's ataxia (FA). I did not really know what it was until I looked it up. I couldn't even spell it either! I did not join the FA Community until I was 17. My first event that I went to was incredible. I try to attend events throughout the year because they are fun, and being with people that are going through similar things is awesome!

Add a comment
Read more: Kyle Waterman

Kelly Barendt

Kelly BHi everyone, my name is Kelly Barendt. I'm 26 years old and just moved to my own apartment in Columbus, Ohio. I was diagnosed with FA at 18, just weeks before high school graduation. I currently do remote freelance work, and the rest of my time is filled with taking care of my health, both physically and mentally. I try to work out every day (key word is try...). I love seeing a personal trainer, practicing Pilates, and going for walks in the sun. I'm fully dependent on a rollator and sometimes use a wheelchair for long distances.

Add a comment
Read more: Kelly Barendt
Page 3 of 103

SHARE

FacebookTwitterLinkedInYoutube
Event H.jpg

 

Archived in
  the Ambassador Blog