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A Night to Fight FA welcomed 350 people to the Navy Marine Corps Stadium's Akerson Tower in Annapolis to raise awareness of Friedreich's Ataxia -- a rare, debilitating, life-shortening, degenerative neuro-muscular disease that affects 1 in 50,000 people.
Symptoms of FA include a loss of coordination (Ataxia) in arm and legs, energy deprivation and muscle loss, slurred speech, vision impairment and hearing loss, aggressive scoliosis, serious heart conditions and diabetes.
Organized by the Burrows Hill Foundation, the fundraiser, held Saturday April 1st, boasted a VW bus photo booth, live and silent auctions, food, an open bar, and music. There was also an emotional component with a video showing that the onset of this disease typically starts in childhood.
Ron Bartek, President of the Friedreich's Ataxia Research Alliance (FARA), provided opening remarks, including an update on the current status of research. Brief remarks were also shared by Ben and Kristin Morrow, a family in attendance that has a daughter with FA.
Rolf Hill and Katie Burrows are the proud parents of three young girls. When their oldest daughter presented with some struggles in balance and coordination, they spoke with their pediatrician. The course of events and testing moved very rapidly and Sam was diagnosed with FA in 2015 at the age of 12. In 2016, their youngest daughter, Rebecca, was also diagnosed with FA at the age of 9. There is currently no treatment or cure for this disease, but a very strong community of those committed to the research necessary to find a cure.
Katie and Rolf tapped into this community right away, including joining research studies and supporting initiatives to both fundraise and ing greater awareness to FA. In 2016, they formed The Burrows Hill Foundation to Fight Friedreich's Ataxia with the mission of finding a cure and supporting those with FA. Strongly connected to their community, hundreds came forward with offers of support to the Burrows Hill family.
Both the Burrows Hill family and the Morrow family shared their experience with event guests, making special note of the impact of having such an incredible support network. Both families provided an appeal to guests to assist in advancing research, including numerous studies and ongoing clinical trials.
The evening raised over $100,000 to advance research, with the Fund-a-Cause portion of the program raising more than $32,000 to provide those with FA with adaptive equipment and modifications to their home for the purpose of increased mobility.
The Foundation has partnered with FARA's Ataxian Athlete Initiative to inspire, motivate, and provide opportunities to develop physical and mental strength. This will facilitate the funding and purchase of adaptive cycling equipment for aspiring Ataxian Athletes so they may start their personal rideATAXIA adventure. At the event was a recumbent bike, owned by Anna Morrow.
Rolf and Katie were taken aback by the generosity of those in attendance as well as those who have made contributions through the organization's website stating, “A Night to Fight was so much more than we ever imagined. The love, support and initiative shown by our friends, family and the community has been such a gift. The progress that FARA consistently makes gives us so much optimism. We know that events such as this will continue to raise the funds and awareness that FARA needs to reach their goal of a cure. We are so proud that because of A Night to Fight, we are able to ing awareness to 350 guests and the community and contribute $70,000 to FARA to help reach this goal.”
For more information, visit Burrows-hill.org.
PHOTOS BY JANNA ASHTON
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