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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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!


 

5th Annual Race for Matt and Grace

The 5th Annual Race for Matt & Grace took place on Saturday, September 20, 2014 in Bryant University in Smithfield, RI. This 5K Race is held in honor of Matthew DiIorio and Grace Hopkins and to benefit those affected with FA and the research alliance group, FARA. This was my third year in a row attending the event, and each year it amazes me how much love and support is given to both the DiIorio and Hopkins families.

Being newly diagnosed with Friedreich’s Ataxia only three years ago, was a tough time for me. I was still attending college at Johnson & Wales University in Providence, RI, which was five hours from home. Not having my family close to me with the new struggles and questions of living with FA, I wanted to get involved. I saw there was the 3rd Annual Race for Matt & Grace and I decided to go with my sister to connect with families and learn more about FARA. Looking back now, I am so grateful to have connected with the DiIorio Family and other families because now I have lifetime relationships with them. Attending the 5K Race of Matt & Grace is a yearly tradition my family and I will share.

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Read more: 5th Annual Race for Matt and Grace

Friends of Jerod Reverse Draw

On September 6th, the Friends of Jerod held our 4th Annual Reverse Draw to raise funds for research to find treatment and a cure for Friedreich's Ataxia...and the results were amazing! With over 300 in attendance, the night not only raised funds, but also raised awareness regarding the facts about FA and made people aware that our researchers are in a race to find a cure for this life-threatening disorder. A delicious dinner was catered by the ever-generous Outback Steakhouse, beverages from Pepsi and followed with dessert donated from Frugatti's Italian Restaurant. Over 25 incredible gift baskets and lots of gift cards from supportive donors were given away throughout the event with our wonderful emcee, Mike Hart of ABC 23, KERO Bakersfield.

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Read more: Friends of Jerod Reverse Draw

Emily and Andrea

Name: Emily Therens

Age: 14

Where do you call home? Spokane, Washington

Are you married? Kids? Single parent? Haha, enjoying being a teen!

Occupation/Employment: Freshman at Shadle Park High School.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was just recently diagnosed but I have been living with symptoms (poor balance, falling, fatigue, fainting, problems with my hands) for several years. My Mom asked my doctor about this at every single visit but no one took her seriously.

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Read more: Emily and Andrea

Pfizer and FARA: Rare Disease Community Outreach

On September 9, 2014, FARA was invited to visit Pfizer as part of their Rare Disease Community Outreach Program. I was lucky enough to be asked to participate on FARA’s behalf and share my personal stories about Friedreich’s Ataxia (FA) and the impact the disease has had on both my life and my family. Pfizer is one of the largest pharmaceutical companies in the world; they have committed to drug discovery in FA and they and we are hopeful that those discoveries will be part of the treatments that will someday lead to a cure!

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Read more: Pfizer and FARA: Rare Disease Community Outreach

Spotlight on Patrick Cogan

Born and raised in Lynn, Massachusetts, Patrick Cogan is a very accomplished 30 year old man, who is also very independent and very driven. He studied Marketing at Salem State College. He works as a clerk and would seem to be your average guy, except he is not. Everyone has a story, and he let me play "reporter" for this month's spotlight. He is a busy man - when he is not working, he is training for and competing in triathlons and traveling to schools throughout MA - to speak to children and young adults. He is about pushing yourself further and overcoming adversity, all while giving back.

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Read more: Spotlight on Patrick Cogan
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