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FARA Ambassador ProgramThe 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.
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.
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Name: 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
Name: 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.
Name: 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.
Name: 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.
Name: 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
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