Kayson Honored for Improving Care for Huntington’s Patients and Families

May. 3, 2017

Elise Kayson and Ira ShoulsonElise Kayson, M.S., R.N.C., A.N.P., has been recognized by the Huntington Study Group with its Lifetime Achievement Award for her dedication to seeking treatments that make a difference and improving the quality of life and outcomes for families affected by the disease.

The Huntington Study Group (HSG) is a network of more than 400 investigators, coordinators, scientists, and Huntington’s disease experts spread across more than 100 research sites across the globe. HSG brings together patients, families, academic and industry researchers, foundations, and government agencies to seek new treatments that improve the life of individuals with the disease.

“Elise continues to be an essential ingredient and role model for the success of the HSG, the many patients and families who we serve, and is a real prize that we celebrate and emulate,” said Ira Shoulson, M.D., the founder of the HSG, a former professor of Neurology at URMC, and currently a professor of Neurology at Georgetown University.

“Elise’s tireless commitment to Huntington’s patients and their families and her 20 plus years of experience in pharmaceutical research has been essential to our efforts to develop new ways to treat this devastating disease,” said URMC neurologist Ray Dorsey, M.D., M.B.A., chair of the HSG. “This award recognizes her dedication and critical role she plays in managing the complex research necessary to bring new drugs to market.”

Kayson is a senior associate in the URMC Department of Neurology, and assistant professor of Nursing, and serves as director, Clinical and Strategic Initiatives in the Clinical Trials Coordination Center (CTCC).

The CTCC is part of the Center for Human Experimental Therapeutics and is a unique academic-based research organization with decades of experience working with industry, foundations, and governmental researchers in bringing new therapies to market for neurological disorders. Since its inception in 1987, the CTCC has played a central role in bringing seven new drugs to market to treat Parkinson’s disease, Huntington’s disease, and periodic paralysis.

Earlier this year, the FDA approved deuterated tetrabenezine for Huntington’s, only the second drug authorized by the agency to treat the disease. This approval was based on research led by HSG on behalf of Teva Pharmaceuticals. Scientific, technical, logistical, and analytical support for the clinical studies was provided by CTCC. Kayson served as URMC principal investigator for this study.

Kayson also currently serves as the head study coordinator for the HSG and is a member of the organization’s executive committee. In this capacity she helps oversee HSG studies and the implementation of education programs for HSG study site investigators and coordinators.

# # #

“I cannot think of anyone who has devoted themselves more thoroughly to the treatment of individuals with Huntington’s disease or who is more deserving of a Lifetime Achievement Award from the HSG than Elise. She has had asignificant andlong-term impacton the way people think about and practice Huntington’s disease clinical research as a result of her passionate inspiration, and incredible leadership ability,interpersonal skills, and truly professional and personal integrity.”

-- Jody Corey-Bloom, M.D., Ph.D., a professor of Neurology at the University of California at San Diego

“Elise has had profound influence on the careers of many coordinators and neurologists over time. For budding movement disorder neurologists, her view of clinical management of patients from the patient and family perspective reinforces why we practice medicine. Beyond the clinic, her contributions to the development and conduct of countless studies have been critical to the success of many programs that ultimately benefit patients, families and the academic community. Elise’s wisdom and experience have touched almost everyone in the movement disorders field, and this award only highlights a small portion of her accomplishments.”

-- Samuel Frank, M.D., associate professor of Neurology at Beth Israel Deaconess Medical Center/Harvard Medical School

“A lifetime of achievement does not begin to capture Elise Kayson's contribution to Huntington's disease. In the 20 years that I have known her, I have been amazed by her professionalism, fund of knowledge and most importantly the personal touch and generosity of spirit thatshe brings to every interaction. Whether she is talking to a patient, a coordinator, an investigator or a CEO, she conveys a level of respect and enthusiasm that makes everyone want to work toward a common goal. I am quite sure that without Elise Kayson, there would be no approved treatments for Huntington's disease. She is the glue that binds all of us. I hope her lifetime of achievement continues well into her twilight years.”

-- Karen Marder, M.D., M.P.H., professor of Neurology at Columbia University

Elise Kayson embodies the spirit and dedication of the large group of generous and energetic people at HSG who have focused on supporting and bringing relief to patients in the HD community. Her commitment to this undertaking has been apparent to us since we first turned to HSG for help in developing a novel therapeutic for Huntington’s disease. We are appreciative of her thoughtful contributions and grateful for her sustained effort.

-- Maurice Zauderer, Ph.D., president and CEO, Vaccinex

“Elise Kayson is every study coordinator’s best friend, but more importantly, every Huntington’s disease family members greatest advocate. The Hereditary Neurological Disease Centre is a strong HSG site in large part because of Elise Kayson. When I questioned our ability to participate in one of the first HSG clinical trials it was Elise that confidently stood behind us, knowing we would not only meet our enrollment goal, but exceed enrollment expectations. Now many clinical trials later, we continue to strive for the excellence that Elise imparted so many years ago.”

-- Gregory Suter, executive director, Hereditary Neurological Disease Centre