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FARA Release: The Life Behind a Race for a Cure: The Keith Michael Andrus Cardiac Research Award
6/20/2013 8:46:43 AM
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Downingtown, Penn., (June 20, 2013) – In the world of scientific research, grants are announced and awarded on what seems like a frequent basis. While many grants funded by organizations or foundations are named specifically for the individuals inspiring their formation, the general public (and sometimes even the recipients) may not be familiar with the face and story behind the grant’s namesake as they are often lost or forgotten in the process.
The Friedreich’s Ataxia Research Alliance (FARA), an organization dedicated to curing Friedreich’s ataxia (FA), a rare, progressive and life-shortening neuromuscular disease for which there is currently no treatment or cure, hopes this will never be the case for the Keith Michael Andrus Cardiac Research Award, the inspiration for which continues to live on in the hearts and minds of the organization and this year’s recipients.
Son, brother, prom date, tattoo fanatic, white water rafter and advocate, Keith Michael Andrus will be remembered for many things, especially for pushing for innovative treatments and accelerating research. But the grant created in his name specifically to further cardiac research related to FA, could leave the biggest impact on those battling the rare disease that ultimately took his life.
Keith experienced a childhood like most, and it was not until he was eight that he began falling more and more often. At eleven he was diagnosed with FA, a disease he and his family had never heard of which would rob him of his mobility, attack his heart and affect his speech. He fought FA courageously until 2010 when he passed away, ultimately from congestive heart failure (the leading cause of early death in FA).
Most people are unaware of the rare disease affecting roughly 15,000. Others who are familiar often do not realize it is a multi-system disease that affects all muscles, including (and most importantly) the heart. In fact, 95 percent of FA patients will experience cardiac complications. For many, it will be heart issues that ultimately take their lives.
As a tribute to Keith’s legacy and to help improve the lives of others diagnosed with FA (a goal Keith strove for even in his final months), the Keith Michael Andrus Memorial Award was established to fund research focused solely on the heart in FA patients.
“Keith dedicated his life to advocating for those with FA and knew that his involvement with FARA and in furthering research efforts would not end when he passed,” said Raychel Bartek, Keith’s mother. “We know firsthand that if you can keep the heart beating and keep the person alive, there is still hope. Where there’s life, there’s hope.”
Now in its third year, the Keith Michael Andrus Cardiac Research Award grants up to $150,000 for up to two years to researchers concentrating on furthering cardiac research for FA. Unlike many grant recipients, one of this year’s, Dr. Mark Payne from Indiana University, knew the person behind the grant that will now fund his efforts.
Dr. Payne is a pediatric cardiologist and is dedicating his life’s work to FA research. He worked closely with Keith and also offers his time and support to other FA families and their cardiologists.
The co-recipient of this year's Keith Michael Andrus Award is Dr. Matthew Hirschey of Duke University. Dr. Hirschey is a highly regarded expert in mitochondrial dysfunction and recently recognized that his lab's findings might shed important light onto the mitochondrial dysfunction that is at the core of FA. When Dr. Payne, from his vantage point of FA cardiology, and Dr. Hirschey, from his mitochondrial expertise perspective, submitted to FARA proposals targeting the same mitochondrial molecule as the potential key to the severe mitochondrial dysfunction in FA hearts, FARA seized on the opportunity to introduce these two scientists. They encouraged them to combine their efforts and expertise in a project that could make a real difference in FA research.
“When it comes to the battle against FA, FARA has always been about collaboration,” said Ron Bartek, Keith’s step-father and the co-founder and President of FARA. “Collaboration among scientists like Dr. Payne and Dr. Hirschey will undoubtedly bring us closer to understanding FA and finally developing treatment and a cure. We are proud to know that Keith is continuing to play a part in this important work, every day.”
About FARA: The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c) (3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich’s ataxia. For more information, visit: curefa.org.
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