![]() ![]() What is a favorite motivational quote of yours: "You are special to get FA and a fighter." What is one way living with FA has POSITIVELY affected your life: Never give up. When FA gets you down, what do you think/do to feel better: When FA gets me down, I count pros of being disabled and still able to do things in my way with not much expectations. What is a good trick to make daily life easier: Be confident in your flaws and accept them with a positive attitude. My exercise routine is climbing stairs and holding bars.ĭo you have any hobbies or special interests: Cooking, writing articles. What do you like to do to stay active and what type of exercises work for you to stay strong? Doing housework, working, sitting in a wheelchair. I transitioned from walking to walker to wheelchair to prevent accidents, to be productive, high functioning, to be less of a burden to others and for independence. I got FA diagnosed on paper in 2019.Īre there any others with FA in your family: No, I am the first.ĭescribe your transition from walking to walker/wheelchair. I was told I might have the disease after telling my condition was getting worse, that I can't even do my daily activities normally and I was getting too clumsy and twisted my ankle and went to hospital. How long have you known you are living with FA 2013. What's a typical day for you? Stay home with parent. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!Įducation: I am a business student, but I want to be a activist. 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. 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. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: This email address is being protected from spambots. The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. FARA Ambassador Program Mission Statement: We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. 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. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. The Ambassadors are a service team within the FARA organization. ![]() She is eager to use her voice and employ her experience to empower others and inspire change by supporting others and giving back to the community.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. She is deeply passionate about helping others and serves as a mentor for multiple youth across the nation and abroad. She has also lent her professional ability to speak 5 languages to the school district, Iowa Human Services, the Johnson County court system, and multiple police precincts in the area. Her passion for serving others has ushered her into leadership for several non-profit and social justice groups including The Human Right Commission, The Congolese Health Partnership (CHP), Program Management Plus with the University of Iowa for Refugees, The Center for Worker Justice (CWJ), JCAHC & The UNA-Johnson County chapter. ![]() ![]() She is well known as an advocate for immigrants and refugees across Iowa and has spent most of her waking hours serving the communities of Eastern Iowa in any way possible. Bijou Maliabo has been an outspoken community activist for more than 10 years now. ![]()
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