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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!


Ambassador Hangout May 31st


As things open back up after quarantine, has your daily schedule changed? Are you getting back to a new normal? Come tell Jacob and Megan what you've been up to! May 31 at 7 pm EDT. .

At FA Hangouts we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

When: A Hangouts will be the last consecutive Tuesday and Wednesday of the month, except on holidays and the like) at 8-9:30 PM Eastern
(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: Every Hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.
Where: Hangouts will now be held on Zoom! You do not need an account. An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.
How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

 
 

Lisa Hultermans

Lisa Hultermans 1 Name: Lisa Hultermans

Age: 20 years old

Where do you call home? I live in the Netherlands in the town of Tilburg.

Education (degree(s): I finished my studies in 2021 with a degree in helping care and welfare, unfortunately I could not work in this, because it became physically too heavy work.

Who do you live with? I still live at home with my parents and my brother of 25.

What's a typical day for you? At the moment, I'm very busy with sports, I'm at least 5/6 days a week busy with sports and further I keep the house at home with my mother.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old, after a year of testing without result I had an epidural where they took out a certain fluid and it turned out that I have FA.

Are there any others with FA in your family? I am the only one who has been diagnosed with it, no one in the family has any symptoms of FA.

Chelsea Conley

Chelsea Conley 2 Name: Chelsea Conley

Age: 36

Where do you call home? The border of Ohio, WV, & PA in a small town called Flushing, Ohio.

Education (degree(s): I graduated HS and went to a local community college for my Associate Degree in business management.

Who do you live with? I live with my boyfriend of 6 years (Zane), his dog (Emma) and my cat (Athena).

What's a typical day for you? A typical day? My days always change. Usually I wake up, shower, do dishes, and read or play video games. Some days I do laundry. Since having FA usually gets me tired pretty early in the afternoon I tend to wake up pretty early around 6:30 am and get my day started since I always have more energy and feel better in the morning and it gives me more time to get done what I need to.

Teen Hangout May 14th


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 discuss your inspirations. Who or what inspires you? All the ambassadors there have something or someone that inspires and motivates them to keep going! Do you have a goal you're working towards that inspires? Is there a person in your life that is always supporting you? Join us for a talk about our inspirations!

When: Saturday May 14th, 1 - 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!

 
 

Noah Griffith

Noah Griffith 3 Name: Noah Griffith

Age: 21

Where do you call home? I am from Salem, Alabama originally, which is where my family lives, but I go to college in Auburn, Alabama.

Education (degree(s): I am currently a junior at Auburn studying journalism. I also work as a sports writer and editor for my school’s student newspaper, and I aspire to be an analyst or some kind of beat writer for an MLB team. My current goal is to excel in all my classes and earn the best grades that I can while getting experience as a journalist and learning a lot along the way. I am looking forward to my graduation in December of 2023. I think FA has led me down this path because I loved playing sports as a kid, but since I am not able to anymore, I turned to writing as a way to stay involved with sports without being on the field or court myself. FA has made caused some challenges in my journey as a sports writer so far with arenas and fields being so difficult to navigate, but I am learning how to deal with that as I go, and I hope to make people aware of the fact that people working in sports can need accommodations too, not just fans, because many media rooms and press boxes are not at all accessible, but simple adjustments can be made to change that. I recently wrote an article on the lack of accessibility in Auburn’s Arena and the University responded and made changes as a result of that. This was amazing to see how I can make a difference even just as a student journalist, and I know I have a diverse perspective that will benefit a lot of people to hear.

Who do you live with? I currently live in an apartment at college with two roommates and am hoping to get a service dog at some point this year! However, I am not far from home, so I go home to see my family on the weekends a good bit.

What's a typical day for you? On a typical day, I go to class, eat lunch on campus, do homework and then cover any sporting events or do any writing assignments I have for the day. I also like to watch sports whenever possible and go to Auburn games. I am a huge Braves fan and Atlanta sports supporter, and I’ll watch just about any college football or basketball game. I also like to play video games with my friends at the end of the day to wind down when I have time. Realistically, I would work out every day, but with such a busy schedule I don’t always.

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