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!


Research Spotlight: Bidichandani Lab

On July 9, FARA Ambassadors Christin Haun, Emily Penn, and Andrea Kiess and their families visited the Bidichandani Lab at the University of Oklahoma College of Medicine. They are doing some amazing research on Friedreich's Ataxia!
 
Dr. Sanjay Bidichandani, and the researchers at the Bidichandani lab shared time, and information with us. Dr. B. has 20+ years’ experience in a FA research lab setting.  He assisted on the Massimo Pandolfo team, who discovered the FA gene in 1996. He has since contributed to the study of the molecular pathogenesis of the disease, focusing on GAA triplet-repeat sequence in order to decipher the precise molecular mechanism(s) underlying Friedreich Ataxia. The thing that caught my ear was that the Bidichandani lab has been able to raise frataxin levels on a cellular level. 
Read more: Research Spotlight: Bidichandani Lab

Sean Mazeres

Hi, my name is Sean Mazeres. I am 23 years old and I was diagnosed with Freidriech’s Ataxia in 2009. I was 16 years old when I found out the devastating results. To hear, at that age, that this disease was pretty much a death sentence, was extremely hard to process and get through. With the support of my family and some of my friends I was able to get by. The low times were very low but the high times have been amazing and such a blessing. I definitely have had my fair share of bad days, also though, my good days.
Read more: Sean Mazeres

Mary Bircher

I’m 29 and was diagnosed with FA when I was 9. (That’s probably my most used sentence ever!)
 
I have brown hair and green eyes and I am 5 foot 2 inches tall (you didn’t want to know this?)…
 
I live in Durham, North Carolina with my boyfriend, Greg, and our crazy corgi, Finn. I have a BA in English and an MA in Victorian literature. (Nerd?) I have a handcycle and I do exercise a bit, but I’m not huge into athletics.
 
I don’t have an interesting backstory, I’m pretty typical. My diagnosis was a pretty smooth process. My biggest issue is scoliosis, which I finally got fixed in 2014!
Read more: Mary Bircher

Mandy Davis

One of my favorite quotes, “In three words I can sum up everything I've learned about life: it goes on.” by Robert Frost, is something I am reminded of, often.
 
I have had a typical life – I have an amazing younger sister (a great brother-in-law and the best new nephew), great parents and very supportive extended family and friends, from a small Midwestern town. I have always been an “old soul,” a quiet one who calms and listens but stands up for my beliefs, individuals and roots for the underdog. I am still typical in a lot of ways, but life happens and I like to think I am more unique than I imagined I would be. 
Read more: Mandy Davis

FA Hangouts 7

The FARA Ambassador Program presents the seventh FA Hangout with the theme of: What Do You Do for Fun?
 
We have had several rounds of successful FA hangouts. We laughed, we connected, we hung out, we learned from and about each other...it was so fun! 
 
This month’s hangout is open to anyone with FA and a translator if needed. Tell us what you do for fun, why you love it, any practical ways you make it happen with FA or just get inspiration from others by learning what they do. Hangouts will be held Wednesday July 29 and Thursday July 30 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9PM EST both days. More times will be added if needed. Email Mary at mary.bircher@gmail.com to sign up. 
Read more: FA Hangouts 7
Page 75 of 106

SHARE

FacebookTwitterLinkedInYoutube
Event G.jpg

 

Archived in
  the Ambassador Blog


Site Map     Privacy Policy     Service Terms     Log-in     Contact     Charity Navigator