FARA Ambassadors are FA patient volunteers who bridge the gap between research, patient care and awareness of Friedreich’s Ataxia. Ambassadors are positive and supportive, peer representatives for the FA community dedicating their time and effort to raise awareness and funds for FARA.
The FARA Ambassador Program (AP) meets on the first Thursday of each month via WebEx. A large contributing factor to the effectiveness and success of this program is being present and active. Planning committees and project resposibilities are determined at the meetings along with sharing of research updates and FARA news.
The AP focuses on several different projects throughout the year. Some examples include:
- Contributing posts to the Ambassador Program blog (curefa.org/ambassadors)
- Writing thank you cards to donors and organizers for FARA events
- Monthly FA Hangouts
- Speaking at fundraisers, community events, pharmaceutical/research organizations
- Awareness: Rare Disease Day, FA Awareness Day, International Ataxia Awareness Day
- Communicating with newly diagnosed families
- Helping others in the FA community with their fundraising projects
How do I get involved?
Spend some time to read the description of the program at the beginning of the application here: http://goo.gl/forms/f70agaQsnp. Consider how the roles and responsibilities might fit in with your life and schedule. Choose the appropriate commitment level for your situation. Then fill out the rest of the online application and click submit! Someone from the AP Leadership will be in touch with you for the next steps. The application deadline is April 30, 2016.
Photo courtesy of Rick Guidotti. positiveexposure.org.
FARA Ambassador Program: A Newbie’s Perspective
The Ambassador Program (AP) has changed the way I feel about having a condition as rare as Friedreich’s Ataxia. I am more positive about the future and I understand better what we need to do as a community to find that cure! A year ago I was an outsider. On day one they pulled me in and I became part of a team.
What does the AP do? Primarily ambassadors serve to bring awareness of FA to their own corner of the globe. Different teams work on awareness at different levels. A member of the speaking team might give a speech to a group with next to no knowledge of FA, while the card team sends notes to participants and contributors to thank them for their own work in bringing awareness and funds to FARA.
So what are you good at? When I joined, I was worried that I was too introverted to make any difference (you won’t catch this girl on the speaking team!), but I found AP projects that fit my personality where I feel like I might be doing some good. No matter your interest, the AP has a place for you!
A year later, I feel that what I do matters. I have connected with members of the FA community I didn’t know before and made new friends along the way. I have also helped to bring people into the community that weren’t there before! We all work together to spread awareness, and awareness leads to research, leads to a cure!
(Did I mention we have a lot of fun too?!)