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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

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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!


 

Advocacy - Our Voices Roar When Joined with Others

Advocacy CollageFARA is fortunate to join many umbrella organizations in advocating for the rare disease community. Together, we bring the patient's voice, concerns and needs to a wider audience as an American FA patient changes from one in 5000 FA patients to one in 30 million people with a rare disease, or 10% of the US population.

Several of these organizations offer opportunities to patients for education, advocacy training, networking and exposure. Together, your voice adds to the conversation that shapes our laws, healthcare, clinical trials and much more. Some of this is possible through events such as a workshop or summit, but travel is not required to be an advocate. Throughout the year, you can gain information on current issues that affect the rare disease community and learn what each of us can do to help raise awareness and support through newsletters and webinars. Sometimes what is needed is as simple as sending an email or calling a legislative office.

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Read more: Advocacy - Our Voices Roar When Joined with Others

Kailey Newcity

Kailey Newcity copyName: Kailey Newcity

Age: 27

Where do you call home? Lake Charles, Louisiana

Education (degree(s): Bachelor of Science in Medical Assisting, but I cannot work in the field. I work as a check out receptionist (sit down job) at an Orthopedic Clinic part-time.

What is your relationship status? I have a boyfriend of 5 years who I live with. No kids.

What's a typical day for you? I work three days a week, do physical therapy twice a week, & see a chiropractor once a week.

How long have you known you are living with FA? I started having obvious symptoms 4 years ago & was misdiagnosed with Charcot Marie Tooth Disease in 2015. I found in February of this year that I actually have FA.

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Read more: Kailey Newcity

Family Weekend in Philly

Family Weekend Collage 2It all started on the morning of October 13th when the annual Ambassador Training begins. After a year of online meetings, we get to meet in person to share, learn, and grow together. We share what we've done, where we've been, and stories of how we've impacted our FA community. This year's speakers were Susan Walther (FARA's Director of Patient Engagement), Jen Farmer (FARA Executive Director), Brigid Brennan (FARA's Advocacy Director), and Kyle Bryant (Founder of the FARA Ambassador Program and rideATAXIA director). Through these speakers, we are updated on research advancements, ways we can advocate for ourselves and others affected by FA, and the biology impacting research approaches. Beyond the education, we receive it is empowering to be surrounded by so many individuals who all have a part interacting with the community to spread FARA's mission. This training day prepares us to speak with families throughout the weekend and year ahead.

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Jade Brim

Jade BrimName Jade Brim

Age 28

Where do you call home? I live in Daytona Beach. FL.

Education (degree(s): I have a Master's in teaching. FA has led me many great places that have laid the foundation for my future. FA led me to the doctor's office where I met my husband. FA led me to an amazing career teaching math online.

What is your relationship status? I am happily married.

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rideATAXIA Philly 2018

ride Philly Collage copyOn Sunday, October 14th, 2018, I had the pleasure of participating in the 10th Annual rideATAXIA Philly. I have been riding, raising funds and enjoying the event for the past few years now. This year was extra special to me because this October marked the 5th year since my diagnosis with FA. So when registration came out, I jumped at the opportunity to build a team again and get ready for the ride!

When it was time to get ready to go to the ride, I put on my rider jersey, my gear and ventured over to Montgomery County Community College with around 600 other riders. I participated in the 4-mile ride, which started at 10am. Alongside me, while I rode this year were my parents. I was also happy to have my grandma in attendance to support the FA community and me. My team, Team Head, was able to raise close to $3,000 this year and hope to raise that next year too.

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