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FARAFARA Cure FA

A Night to Fight FA

Hill BurrowsOn April 1, 2017 The Burrows Hill Foundation held our inaugural 'A Night to Fight FA' auction fundraiser. We formed the foundation about six months ago and immediately began thinking of what we could do to help the FA community. We decided on an auction fundraiser and got to work right away. With the help of countless friends and family members and amazing support from the community, it was a smashing success.

Our 350 guests were greeted at US Naval Academy Football stadium by a 1976 VW bus that has been converted into a photo booth. After some fun photos, guests headed up to the top of the stadium to the Akerson Tower where they were treated to a stunning view of the Navy Football Stadium and the city of Annapolis. Our silent auction included 75 items and our live auction included trips to Disney World, Deep Creek Lake, Sanibel Island, Easton Maryland and the British Virgin Islands. In addition, we had a gorgeous hand-made wooden kayak, that was built specifically for this event. Ron Bartek agreed to speak at the event and was able to share some knowledge about FA with an audience that was largely unfamiliar. 

The event raised over $100,000, which far exceeded our expectations. We are so excited to be able to contribute $75,000 to FARA to be used to support research initiatives. We have also formed a partnership with the Ataxian Athlete Initiative and were able to make a $10,000 donation to help provide adaptive cycling equipment to those with FA. The remaining money raised during the event will be used to assist those affected by FA. We are already thinking about how to make this event even better next year - A Night to Fight FA - Round Two!

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About the Burrows Hill Foundation -

Rolf Hill and Katie Burrows are the proud parents of three amazing daughters who seemed limited only by their imaginations – spirited, empathetic and intellectually curious. But when Rolf and Katie became concerned about their oldest daughter’s decrease in coordination and balance, it led to a November 2015 diagnosis they never expected for a disease they had never heard of – Friedreich’s Ataxia (FA). A rare, debilitating, life-shortening, degenerative neuro-muscular disease that affects 1 in 50,000 people, FA threatens an uncertain future. Symptoms include a loss of coordination (Ataxia) in arms and legs, energy deprivation and muscle loss, slurred speech, vision impairment and hearing loss, aggressive scoliosis, serious heart conditions and diabetes.

Less than one year later, and now with the experience and ability to see the most minimal indications of FA, Rolf and Katie grew similarly concerned about their youngest daughter. In October 2016, genetic testing confirmed that she also has FA. While each of their daughters is strong in spirit, they know that there is much work to be done. With immeasurable and unwavering support from their friends and families, Rolf, Katie and their girls are committed to helping other families better understand FA and find a cure.

The Burrows Hill Foundation to Fight Friedreich’s Ataxia was established to raise public awareness of FA, to raise money for research to find a cure for FA and assist those affected by FA.

www.burrows-hill.org

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are 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.
 
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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