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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!


Join our Teen Hangout Thursday

Teen Hangout 9-24-2020 Thursday 9/24 8-9 PM ET

We are going to talk about Music. Do you have a favorite group or song? That one who always makes you feel good in any situation? Do you make music, what musical instrument do you play? We hope to see you there talking in or just listening to, in this lively conversation. Music remains an unbeatable (or bad mood beatable [ha, ha]) remedy against stress. FARA Ambassador Madelyn Frederick will lead this conversation.

I can send out the invitation as soon as you/your teen tells me they're coming. Look for an invitation from the Friedreich's Ataxia Research Alliance. If you have had technical problems in the past, please try again!!!!

If you already signed/have a signed consent form, no need to do it again. It is good until you/your parent revokes it.

If you want to just listen (which is TOTALLY FINE), let us know in advance if you don't want us to talk to you when you join. Otherwise we'll greet you when you join. You can email me or tell anyone on our team. Let us know if you have any questions!

Let us know if you have any questions! farateenhangouts@gmail.com or jeantw62@gmail.com

Thanks!

Jean, Matt, Caroline, Madelyn, Kyle, Camila, Andrea, Ashlea, Michelle, Breaunna, Emily & Sam (The FA Teen Hangouts Team)

PS: feel free to email me if you have any questions, comments, or concerns!
 

André de Lucca Venturini

Andre VenturiniName: André de Lucca Venturini

Age: 27

Where do you call home? Sao Paulo, Brazil

Education: Degree in business administration at Universidade Presbiteriana Mackenzie (2013)

What is a typical day for you? I practice physical therapy, gym, use my blog to help people and occasionally go to meetings because next year I'm going to try entering in Camara de Sao Paulo as a "Vereador" to represent people with disabilities

Óscar Muñoz Soguero

O SogueroName: Óscar Muñoz Soguero

Age: 34 years

Where do you call home? Villanueva de la cañada (Madrid, Spain)

Education (degree(s): Bachelor of Pharmacy and Nutrition from Alfonso X University

Who do you live with? I live with my parents in Villanueva de la cañada, and on school days, I live in the Rehabilitation Center for people with disabilities in Salamanca.

What is a typical day for you? II get up at approximately 8 o'clock. I receive specific technical aids, I carry out a web page creation course. In between, I do my therapies: Speech therapy, Physiotherapy, Occupational therapy. In the afternoon, I go to the gym and I do therapeutic yoga exercises. I also interact with colleagues.

Justin Bolinger

J BolingerName: Justin (Bo) Bolinger

Age: 42

Where do you call home? Montana

Education (degree(s): Associates in Accounting

Who do you live with? I live with my Wife (Jennifer) and 3 kids (Riata, Ty and DJ)

What is a typical day for you? I play some video games in the morning, and then go outside to my shop and build things. I also go for a bike ride with my family on my trike. With FA, I am still able to run a lawn mowing business with my kids, and build fences in the community.

Dante Canuto dos Anjos Filho

Dante CanutoName: Dante Canuto dos Anjos Filho

Age: 39 years old

Where do you call home? I live in Vitória de Santo Antão, an inner-city in Pernambuco, northeast Brazil.

Education: I went to Veterinary school for four semesters.

What is a typical day for you? Like everybody else, my routine during the pandemics has little to do with what used to be my routine. I stay home in front of the computer and play games that help me to train my memory and the motor coordination of my upper limbs. I also spend a good portion of my time listening to Brazilian rock-and-roll from the 80s and 90s. Before the Covid-19 I used to spend my time doing my collection of therapies: physical therapy, hydrotherapy, speech therapy, and occupational therapy.

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