Have you ever been to Flatbread Restaurant? Every Tuesday night they have a benefit night for a different charity with a portion of every pizza sale going directly to a specific charity.
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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.
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 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!
Name: Stephanie Kilgore
Where do you call home? Fort Worth, Texas!
Education (degree(s): Bachelor of Arts in Journalism with a concentration in Public Relations!
Who do you live with? I currently live with my parents, and I have never been married nor have I had any children.
What's a typical day for you? There is no such thing as a typical day when you have FA. That rhymed , LOL! I am on the Board of Directors for a nonprofit called Camp Craig Allen. I am their social media coordinator writing their blog, updating their Pinterest page, and updating their Facebook page. On Facebook I also am the main admin for a support group called "Camp Craig Allen's Corral!" Volunteering for them warms my heart and keeps me busy! You can check them out at www.campcraigallen.org!
On Friday, May 1, 2015 FARA hosted it's first FA Conference in Iowa City. There were 14 individuals with FA and their families in attendance. Families traveled from several states in the Mid-West to attend the conference.
Horizon Pharmaceuticals is developing a treatment for FA. Before the conference, a group of people with FA attended a focus group to see what challenges we had in taking the drug. This medication has to be injected. The thought of injecting a needle into my own arm is scary to me, but the hope of a cure overshadows my fear.
Jennifer Farmer started the conference by giving everyone an overview of FA. Every time I hear her speak, I learn more about FA. She also told us about ongoing clinical trials and the need for people with FA to be enrolled in the patient registry.
Name: Manoj Dahal
Where do you call home? Changunarayan, Bhaktapur, Nepal
Education (degree(s): Masters in Business Studies from Tribhuwan University, Katmandu Nepal. Completed in 2007 but being FA, I am without job. Here in Nepal, nobody wishes to take me as an employee because of my physical condition as we do not have any accessible environment for disabilities.
Who do you live with? I am single, living with my parents.
What's a typical day for you? I am staying at home making entire world within four corners of my room.
How long have you known you are living with FA? (When and how were you diagnosed?) Since 1995, I have been FA. When I visited the doctor at Bir hospital in Kathmandu by checking my symptoms, he diagnosed me as FA. I had got my MRI also.
Are there any others with FA in your family? No any others in my family is with FA.
Describe your transition from walking to walker/wheelchair. From 1995,I walked with support of my friends. When I used to walk on my own, other people used to call me a drunkard. After 2010, I stay most of the time in my home. Once or twice in a month when I go out to visit or for special purpose, two of my friends catch me to support walking because we have no good accessible wheelchair in our place. That's why I have to make four corners of my room as entire world.
On Saturday, April 18 The FA Project held their 6th Annual Striking Courage Bowlathon at Candlewood Lanes in North Reading Massachusetts. It was a great night. There was laughing, there was bowling, there was air guitar and there were inspirational stories. It was a great fundraiser for a great cause.