Friedreich's Ataxia Research Alliance - FARA Ambassador Program

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

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!

Dee Smith

Name: Dee Smith

Age: 26

Where do you call home? Sheffield South Yorkshire, England

What is your education? I studied performing arts at college, went on to do a creative writing undergraduate degree with honors. Then went on to do a Postgraduate in Psychology. I fell into modeling and creating. But having FA really helped me find my calling by being a disabled advocate. Representing disability honestly and beautifully.

Who do you live with? I live on my own with my fluffy black and white cat in a small apartment.

What's a typical day for you? A normal day for me involves checking and replying to emails and DMs on my social media. Writing, planning and scheduling photoshoots and creative projects, meetings, podcasts. working out, cleaning, cooking. Chores, shower and bed with my snuggle bug of a cat.

When and how were you diagnosed? I was diagnosed with FA at 19. But I knew something wasn’t right at 16. My balance felt off. Extra work to be coordinated. A blood test gave me a name to my condition.

Teen Hangout March 11th

Join the FARA Ambassadors for a hangout for teenagers with ataxia. FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least two adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

At this hangout, we will talk about life after social distancing. How have things changed for you? What is better? What is worse? Do you love Zoom? Hate Zoom? Somewhere in between? How has hanging out with your friends changed?

When:	Saturday, March 11th from 1 to 2 PM ET (The hangout opens 15 minutes early to try to work out technical issues, please remember we are volunteers not IT professionals, come early if you’ve never attended a hangout before)
Who:	Teens ages 13 to 19 (Please note: teens of all ages will be together)
Where:	On Zoom so if you have access to the internet and speakers and a camera on your device, you can come!
How:	If you are under 18, you need to get your parents or guardian to sign a consent form. This should be requested from and emailed to Madelyn at madelyn.frederick@gmail.com. Parents/guardians can also ask questions at this email address. If you have consent or are 18 or 19, Jean will send you the Zoom link once things are set up. If you think you should've gotten the link and didn't, email Jean. 18 and over: just let us know that you want to come by emailing us at madelyn.frederick@gmail.com. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom. Been before? If you already have permission or you’re 18+, Jean will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don’t get one, email Jean at jeantw62@gmail.com. Pop an email to Madelyn if you have questions!

Hasitha Illa

My name is Hasitha Illa and I am an HR by profession and by passion I am a published author, motivational speaker as well as a disability advocate. I was diagnosed with a #rare disease called Friedreich's ataxia. In the beginning, this diagnosis was obviously very heart breaking but later on, it fueled the fire to do many many things. One of them being to publish a book!

Thank You,
Hasitha Illa
Disability Advocate | Motivational Speaker | Published Author

David Zehnder

Name: David Zehnder

Age: 28

Where do you call home? Nürnberg, Germany

Education: Electronics technician for devices and systems, completed further training as a state-certified technician (electronics)

Who do you live with? I live with my parents.

What's a typical day for you? My day starts at 5.30am. At 6am, I start working (as IT support) until noon (45min lunch break). I keep working till 2pm. At 4pm, I have one hour of physical therapy. Then I get home, have dinner, relax in front of the TV or by listening to the radio. I go to bed at 10pm.

How long have you known you are living with FA? It started slowly in 2013 with walking instability. I got the diagnosis in 2016 (genetic test).

Dillon

Hello Everyone,

My Name is Dillon, 27, living in Central New York. I’m honored to be returning to the AP. If you don’t know me, I’m a big advocate for Mental Health and recognize the impact it can have on a rare disease community.

I’m very invested in FA clinical trials and research. I am proud to be someone who speaks up and out about my concerns.

So, let me tell you a bit about me, I was clinically diagnosed almost a decade ago believe it or not; cause I can’t, over that time I’ve participated in trials like: The Cardiac MRI Study, NAD+ Exercise Trial, Moxie/Omav Trial, Retrotope Trial, Natural History Study (annually), and currently I’m participating in the Track-FA study as well. I plan to do more to contribute to help scientific research in general and of course our community.
Dillon 2

I’m a big Marvel/DC, Star Wars & Science Fiction Fan and love all things to do with that genre, follow me on TikTok & Instagram: @dmlh_7 for more of my journey!

I also would like to say that I look forward to getting to:

Represent The FA Community again
Help & Encourage others to use their voices
Bring more awareness to the world about Rare Diseases
Rediscover the importance of friendship, community, FAmily, leadership & inner strength!