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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

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!


Sule

Sule 1 Name: Sule

Age: 24 years old

Where do you call home? I live in Kayseri, Turkey.

Education (degree(s): I have a license in classroom teaching. I need to take one more exam for my job. I am also attending school.

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

What's a typical day for you? I work all day long. First work, then studying. I admit it’s as tiring as it sounds, but I like to keep myself active.

Ambassador Hangout June 29th

Mobility Devices Image
Do you use a mobility aid because of FA? Did you decorate it? Name it? Come talk walkers and wheelchairs with Chris and RJ! Wednesday June 29, 8-930 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: FA Hangouts will be the last Tuesday or Wednesday of the month, except on holidays, 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. jeantw62@gmail.com

 
 

Jean Walsh

Jean 1 Name: Jean Walsh

Age: 59

Where do you call home? Northern Massachusetts

Education (degree(s): I have two master's degrees: one in community social psychology and the other in social work.

Who do you live with? I live with my husband of, gulp, almost 27 years and our two dogs. One is my sweet service dog Wendy and the other is our kind of obnoxious pet, Sadie.

What's a typical day for you? I am not working right now. I am trying to stay focused on being as healthy as I can. So a lot of the day is working out and trying to eat clean. But I also do FARA Ambassador things and am a member of my city’s Commission on Disability Issues trying to make my city accessible.

Kelly Gregory

Kelly 1 Name: Kelly Gregory

Age: 22 years old

Where do you call home? Central Minnesota

Education (degree(s): Associates Degree in Accounting

Who do you live with? I own a house with my husband

What's a typical day for you? 8-5pm work at a bank. Come home, 20-30min workout, supper, shower, relax, bedtime around 8pm

Talia Rodrigues Medeiros

Talia 1 Name: My name is Talia Rodrigues Medeiros.

Age: I'm 24 years old.

Where do you call home? In the interior of Goiás, a town with few inhabitants called Gouvelândia.

Education (degree(s): My schooling is higher education, I have 2 degrees, in Law and in Pedagogy, where I had to go to another city many times without accessibility or comfort. I seek a specialization and work in Law. I see a contribution from AF in the possibility that I gained in putting myself in the place of others. Acting with excellence, I can contribute to the defense of the wronged and the formation of children in order not to see disability in a pejorative and restrictive way. As well as starting accessibility in a city where this is not common, in a state that is still retrograde and in a country that is still prejudiced.

Who do you live with? I have been in a stable relationship for two years and I live with my partner and pets.

What's a typical day for you? I wake up at 6:20 am, my mother comes to my house, helps me with organizing things for work, we go to work (we work in the same place), I return home at 11:15 am. My husband helps me with the medication and does the lunch for us. He puts me to bed, where I rest until 2 pm and start studying and work for extra income. I stay with my pets in my room until my partner arrives and helps me get dressed to go to the gym, around at 5:30 pm. I go to the gym but I first go to my parents' house to see my father who has early Alzheimer's and he is in the last stage of the disease. At 7:00 pm I leave the gym and I go to my mother’s house to take care of my social project for feeding animals that live on the street. I take a shower there and go back to my house at 20:00, more or less. When I get home, I feed my animals and take care of my collection of plants. At 10pm I have dinner, drink medicine and go to bed watching TV until I sleep.


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Ambassador Blog Archives


 
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Meet The Community

FARA Ambassadors

Hangouts

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