Over the last few weeks, the social media world has been rapt with the “Ice Bucket Challenge” to support research and treatment of Amyotrophic Lateral Sclerosis – ALS – also commonly referred to as “Lou Gehrig’s Disease.” While it is easy to enjoy watching celebrities, former Presidents and your friends and family succumb to an ice cold deluge of water, it is important to consider what the viral buzz has yielded for the ALS Association and what researchers, health providers and care givers are doing to combat this insidious illness.
This week, the ALS Association reported record increases in their fundraising from existing donors and more than 637,000 new donors – many who were likely encouraged by the Ice Bucket Challenge. The additional contributors have yielded more than $31 million to the ALS Association – several times more than the $1.9 million received this time last year.
On Monday, I was challenged by my colleague at Eastern Kentucky University – President Michael Benson – to accept the Ice Bucket Challenge. In accepting his challenge and others, I challenged and was joined by faculty and staff that represent the University of Kentucky’s ALS Research Center for our big blue ice bath.
The Kentucky Neuroscience Institute is home to the only ALSA Certified Center in Kentucky and the only one between Atlanta and Indianapolis. The certification signals that our team employs the best practices to provide access to the state-of-the-art care for patients with Lou Gehrig’s disease.
Led by Dr. Edward Kasarskis, UK’s team of researchers is at the leading-edge of ALS research. In partnership with our affiliate at the VA Medical Center, we have maintained a commitment to improving outcomes for ALS patients since the 1980s. Many collaborators, expert faculty, students and postdoctoral fellows have studied ALS mortality in Kentucky; participated in formulating the World Federation of Neurology criteria for diagnosing ALS; and contributed to the identification of genetic causes of the disease. For the last ten years, they have led a multicenter study of nutrition requirements for ALS patients.
In 2003, Dr. Kasarskis’ team played a pivotal role in identifying military service as a risk factor for developing ALS in veterans of the first war in the Persian Gulf. Their work became one of the foundational studies making ALS a “service connected” disability in the VA system.
Our mission and vision calls upon us to answer the relevant questions of our day and pose the unasked questions that help shape our future. ALS afflicts some 5,600 additional people across the United States every year. The chronic, unbiased disease impacts some 30,000 at any given time, according to the ALS Association.
Across UK’s research enterprise, we are addressing questions related to ALS and other chronic illnesses that plague the people we serve. The research trials we conduct each day are part of our effort to find local solutions that can have national implications. Research makes the difference in the lives of millions, but significant research needs people in order to evolve and improve health care.
UK’s Center for Clinical and Translational Sciences’ ResearchMatch database is part of a national resource developed to pair research volunteers with world-class researchers. Participation is a way to learn more about your own health and be a part of pioneering new solutions to the seemingly intractable problems we face. Matching volunteers to researchers is key to breaking new barriers in discovery and UK’s ResearchMatch is a pathway to get involved.
This is why a multi-disciplinary, broadly supported and sophisticated research enterprise is not only essential for the University, but a fundamental component of a healthier and more prosperous future for Kentucky. This is the future that we pursue each day across our campus and in the communities we work with across the state.
As people participate in the ALS awareness and fundraising campaign, we must remember to do so safely and responsibly. Sadly, two firefighters were injured this week in Campbellsville during an organized challenge. The thoughts and prayers of the Big Blue Nation are with Fire Department Captain Tony Grider and Firefighter Simon Quinn as they recover from their injuries.
Columnist, Jim Murray, described legendary baseball player Lou Gherig as “a symbol of indestructibility – a Gibraltar in cleats.” The nationwide campaign that has evolved over the last few weeks is symbolic of that strength. Let us continue honoring that legacy by standing strong in support of further research and improved treatment of ALS.