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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.

Said Benchrif

Said BenchrifName: Said Benchrif

Age: 30 years old

Where do you call home? Sale City. Morocco

Education (degree(s): I have finished secondary education with an emphasis in sciences humaine (social sciences).

Editor’s Note: Secondary Ed. In Morocco - There are three years of lower-middle school. This type of education is provided through what is referred to as the Collège. After 9 years of basic education, students begin upper secondary school and take a one-year common core curriculum, which is either in arts or science. First year students take arts and or science, mathematics or original education. Second year students take earth and life sciences, physics, agricultural science, technical studies or are in A or B mathematics track. https://en.wikipedia.org/wiki/Education_in_Morocco

August Teen Hangout 2020

Teen Hangout 8-29-2020 Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

Join our Thursday night hangout this month in a discussion lead by FARA ambassadors Breaunnna Hoffman and Madelyn Fredrick about going back to school with ataxia during Covid 19. Are you getting ready to go back in person, online, or in some combination? Do you agree with your family's decision about going back to school? Are you worried? Are you excited?

Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation…the theme gets us going, but we definitely don't stick to it! It isn't counselling.

When: Thursday, August 27th, 8-9 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 on Zoom before.)
 
Who: Teens with ataxia ages 13 to 19 (Please note: all the teens will be together)
 
Where:    On Zoom so if you have access to the internet, 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 download and sign this consent form. Once signed, this should be emailed to jeantw62@gmail.com.  Parents/guardians can also ask questions at this email address. If you already have a signed consent form, no need to get a new one! The signed form is good until the signer revokes it. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom.

18 and over: just let us know that you want to come by emailing us at farateenhangouts@gmail.com or jeantw62@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 Walsh 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 either address if you have questions!

 

Subcategories

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!


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