Saturday, September 10, 2022 | 9 A.M. – 1 P.M.
Fairfield Inn & Suites
3877 SW 37th Blvd
Gainesville, FL 32608
Join us on Saturday, September 10th for a Huntington’s Disease (HD) Education Day for patients and caregivers!
Learn about services, care options, and life management tips, research and therapies for HD. You will have the opportunity to ask questions and speak with clinicians, researchers, social workers, geneticists and rehab staff during the “Ask the Experts” panel.
The event is free, but registration is required.
To register, please contact Alana McKay,LCSW at alana.mckay@neurology.ufl.edu
Program Schedule
8:30 A.M. – 9:00 A.M.
Doors Open
9:00 A.M. – 9:15 A.M.
Welcome and Introductions
Nikolaus McFarland, M.D., Ph.D.
Associate Professor of Neurology
Wright/Falls/Simmons Professor of PSP/Atypical Parkinson’s
Director, UF HDSA Center of Excellence
Norman Fixel Institute for Neurological Disease at UF Health
Addie Patterson, D.O.
Assistant Professor of Neurology
Norman Fixel Institute for Neurological Diseases at UF Health
Associate Residency Program Director
9:15 A.M. – 9:45 A.M.
Advances in HD Gene Therapy
Nikolaus McFarland, M.D., Ph.D.
Associate Professor of Neurology
Wright/Falls/Simmons Professor of PSP/Atypical Parkinson’s
Director, UF HDSA Center of Excellence
Norman Fixel Institute for Neurological Disease at UF Health
Dr. McFarland is the Director of the UF HDSA Center of Excellence. He also directs the UF CurePSP Center of Care and Fixel Institute Biomarker Program, and runs the PSP/Atypical Parkinson’s clinic with focus on multidisciplinary care. His is actively involved in several clinical research trials for HD and Parkinson disorders, including MSA and PSP.
9:45 A.M. – 10:15 A.M.
Genetic Testing in HD
Lee Kugelmann, MMSc, GC
Genetic Counselor
Norman Fixel Institute for Neurological Disease at UF Health
Ms. Kugelmann is a genetic counselor at the Norman Fixel Institute for Neurological Diseases. She received her Master’s degree in Human Genetics and Genetic Counseling from Emory University’s Genetic Counseling Training Program.
10:15 A.M. – 10:45 A.M.
Home Safety Considerations for Huntington’s Disease
Nicole Tester, Ph.D., MOT, OTR/L
Occupational Therapist
Norman Fixel Institute for Neurological Disease at UF Health
Dr. Nicole Tester went to the University of Florida where she received her Ph.D. in neuroscience prior to becoming an occupational therapist. For the past 5 years, she has worked with individuals with Huntington’s Disease and their families at the Fixel Institute.
10:45 A.M. – 11:00 A.M.
Break
11:00 A.M. – 11:30 A.M.
TBD – Coming Soon!
Amber L. Southwell, Ph.D.
Assistant Professor
University of Central Florida
Dr. Southwell is faculty at the Burnett School of Biomedical Sciences, Division of Neuroscience. She earned her PhD at the California Institute of Technology working with Dr. Paul Patterson to develop an intrabody gene therapy for HD. Afterward, she did postdoctoral research at University of British Columbia where she developed novel mouse models of HD, selective mutant huntingtin gene silencing therapy, and CSF biomarker for brain huntingtin. In 2017 she she joined UCF to develop her own research lab and to continue work in HD and other inherited diseases.
11:30 A.M. – 12:00 P.M.
Palliative Care in HD
Alana McKay, LCSW
Clinical Case Manager Social Worker
Norman Fixel Institute for Neurological Diseases at UF Health
Mrs. McKay is our new Clinical Case Manager Social Worker at the UF Health Norman Fixel Institute for Neurological Diseases. She received her MSW from the University of South Florida and previously worked as a Sr. Human Services Analyst at the Agency for Healthcare Administration and Supervisor at Tacachale.
12:00 P.M. – 12:30 P.M.
Lunch & Ask the Experts
Question and answer session, followed by wrap-up.
Presented by: Huntington’s Disease Center of Excellence at the Norman Fixel Institute for Neurological Diseases at UF Health. This event is funded by the Huntington’s Disease Society of America with support from Genentech, Sage Therapeutics, Neurocrine and uniQure.