Our mission for today is to provide educational resources, practical information, and interdisciplinary support for families impacted by HD. We have assembled a group of expert speakers from seven centers around the southeast and two national organizations to support these goals. We hope that you will find this education day useful and enlightening.

  • 9:00 – 9:30: WELCOME AND HDSA SITE INTRODUCTIONS: ALL (LIVE STREAM)
  • 9:30 – 10:00: WHAT IS HD? (PRE-RECORDED)
  • 10:00 – 10:30: WHY GENETICS IS IMPORTANT! (PRE-RECORDED)
  • 10:30 – 11:00: TALKING TO CHILDREN ABOUT HUNTINGTON’S DISEASE (PRE-RECORDED)
  • 11:00 – 11:30: STRATEGIES TO IDENTIFY AND DE-ESCALATE PSYCHOLOGICAL CHALLENGES IN HUNTINGTON’S DISEASE (PRE-RECORDED)
  • 11:30 – 12:00: EVERYTHING YOU NEED TO KNOW ABOUT MEDICARE/SOCIAL SECURITY DISABILITY INCOME (SSDI) (PRE-RECORDED)
  • 12:00 – 12:30: CARING FOR THE CAREGIVER (PRE-RECORDED)
  • 12:30 – 1:00: WHAT IS HUNTINGTON’S DISEASE ADVOCACY? (PRE-RECORDED)
  • 1:00 – 1:30: THE LATEST IN HD RESEARCH (PRE-RECORDED)
  • 1:30 – 2:30: ASK THE EXPERT PANEL DISCUSSION (LIVE STREAM)

Details About the Webinar

WEBINAR ENDED

About the Speakers

1602071654-44f5b618dc4f7ac6 Christopher Tolleson, MD, MPH
WHAT IS HD?

Dr Christopher Tolleson is a Movement Disorder specialist at the University of Tennessee Medical Center. He did his medical school training at the Medical College of Georgia and his residency in Neurology at the University of North Carolina Chapel Hill, finishing that in 2010. After that, he did a fellowship in Movement Disorders at Vanderbilt University in 2010-2011, and then stayed on as faculty for six years before coming to UT Medical Center in hopes of assisting Dr Brewer in continuing to expand the program. Since being here, he has been the Medical Director for the Huntington’s Center of Excellence at UT Medical Center which is part of the Level 1 Center in Tennessee led by Vanderbilt University.

1602071810-37246aca9d43ab51 Marissa Dean, MD
WHY GENETICS IS IMPORTANT!

Dr. Dean is board-certified in neurology by the American Board of Psychiatry and Neurology. She attended the University of Michigan to obtain a Bachelor of Science degree with a focus on the Neurosciences. She then completed medical school and Neurology Residency at Wayne State University School of Medicine in Detroit, Michigan. She served as a Chief Neurology Resident in her final year. She completed a Movement Disorders Fellowship at the University of Alabama at Birmingham, which was supported by the Edmond J. Safra Fellowship in Movement Disorders. She is currently an Assistant Professor of Neurology at the University of Alabama at Birmingham and the Co-Director of the UAB Huntington’s Disease Program. She has a special interest in the education of genetics within movement disorders, including Huntington’s Disease.

1602071954-9e65ced78bd07589 Jennifer Simpson, LCSW
TALKING TO CHILDREN ABOUT HUNTINGTON’S DISEASE

Jennifer Simpson, LCSW is the Asst. Director of Youth & Community Services at HDSA. She’s been working with the HD community for six years, and has spent that time creating and growing youth programs through HDSA’s National Youth Alliance and growing our community of advocates by training folks impacted by HD to share their stories with those in power. In her current role she also oversees the nationwide network of social workers and support group leaders. In her spare time, she loves giving her dog Sadie far too much attention and taking her on long walks in the woods.

1602072178-838e7d87ea428084 Chandler Swope, LICSW
TALKING TO CHILDREN ABOUT HUNTINGTON’S DISEASE

Chandler Swope, LICSW is the Director of Youth Services for the Huntington’s Disease Youth Organization (HDYO). Chandler joined the HDYO team in 2014 to launch the first professional youth service program in the United States. Through this position she has worked with 100’s of families and young people across the United States impacted by HD. She is also responsible for planning and facilitating the North American HD Youth Camp that launched in 2015. Day-to-day she works with individuals (35 years of age and under) and families to provide support, answer questions and help navigate their journeys with HD.
She is extremely active in the global HD Community and can be found advocating for the HD Parity Act on Capitol Hill as well as co-leading projects for the Young Adults Working Group for the European Huntington’s Disease Network. She has an extensive background working with young people and families to address family trauma and crisis. Chandler received her Master’s in Social Work from Washington University in St. Louis.

1602178583-f1296ad309e6d781 Lisa Hale, LMSW
TALKING TO CHILDREN ABOUT HUNTINGTON’S DISEASE

Lisa received her Master’s in Social Work from the University of Tennessee, in addition to a Trauma Treatment Graduate Certificate in 2015. Concurrently, Lisa was awarded the Vanderbilt Kennedy Center Leadership Education in Neurodevelopment Disability (LEND) long-term trainee position for the 2014-2015 academic year where she completed inter-professional training and more than 300 hours of didactic, clinical and leadership training focusing on Family-centered support and services to children with disabilities, community coordination of care and cultural and linguistic competences. Lisa has been integral in creating the Level 1 HDSA COE HD Clinic interdisciplinary team at Vanderbilt University Medical Center and supporting HD patients and their families in Tennessee.

1602088718-3d114e5595bdacc5 Jeffrey Stovall, MD
STRATEGIES TO IDENTIFY AND DE-ESCALATE PSYCHOLOGICAL CHALLENGES IN HUNTINGTON’S DISEASE

Dr. Stovall is a Professor of Psychiatry and Behavioral Sciences at the Vanderbilt University School of Medicine in Nashville, Tennessee where he is also an Affiliate at the Vanderbilt Institute for Global Health. Over the past twenty-five years he has worked in community psychiatry and in primary medical settings with an emphasis on the treatment of serious mental illness, the integration of psychiatric and medical care, homelessness, and cross-cultural psychiatry. He has worked extensively with refugees in the United States, and has consulted with Physicians for Human Rights in evaluating and treating victims of torture who are applying for asylum, including for individuals being held in detention. For five years he consulted with the Ministry of Health of the Republic of Vietnam at medical schools in Hanoi, Hue, Thai Nguyen and Ho Chi Minh City. His work with the Ministry of Health focused on training primary care physicians in the recognition and treatment of psychiatric disorders. He worked with the Substance Abuse and Mental Health Services Administration in New Orleans following Hurricane Katrina providing care to individuals displayed by the flood.

1602079745-bb960d2ee07b8130 Allison Bartlett, Esq
EVERYTHING YOU NEED TO KNOW ABOUT MEDICARE/SOCIAL SECURITY DISABILITY INCOME (SSDI)

Allison Bartlett is HDSA’s Manager of Disability Program and is a disability attorney who specializes in guiding people with rare, chronic conditions, like Huntington’s disease, through the complex Social Security disability system. She comes to HDSA from the Caring Voice Coalition, where she represented patients with rare diseases, including HD, in their navigation of the legal processes associated with securing disability support. Allison has more than ten years of experience in the non-profit field, working on a variety of issues including human rights, domestic violence, social justice and environmental protections. Allison holds a J.D. from the University of Cincinnati College of Law and a B.A. in International Affairs from James Madison University. She is admitted to the Virginia Bar.

1602080115-f24b046c3f30d86e Elizabeth Ferluga, MD
CARING FOR THE CAREGIVER

Dr. Ferluga graduated from Washington State University with degrees in Psychology and Neuroscience. She then went to medical school at University of Iowa, graduating Alpha Omega Alpha. She completed her residency in Neurology at Vanderbilt in 2011 where she served as chief resident her final year. She continued at Vanderbilt as a movement disorder fellow then as an attending in movement disorders and general neurology. In 2015, she moved to Chattanooga to join UT Erlanger Neurology to start a movement disorder program. She has since become medical director of neurology. She continues to be an active clinician in movement disorders, serving as co-director of the Chattanooga branch of the Vanderbilt HDSA center of excellence.

1602080548-93ec147d257d4fe5 Sarah Hines, LCSW
CARING FOR THE CAREGIVER

Sarah Hines completed her undergraduate studies at Wake Forest University, where she graduated Cum Laude with a Bachelor of Arts in Philosophy and a focus in ethics. She went on to receive her Master of Science in Social Work at the University of Texas at Austin. Sarah completed her clinical training at MD Anderson Cancer Center in Houston, TX. She relocated to Chattanooga in 2017, where- as a Licensed Clinical Social Worker- she provides psychotherapy and other psychosocial services to patients and loved ones who receive care within the UT-Erlanger Neurology outpatient clinic. She is a member of both the Amyotrophic Lateral Sclerosis (ALS) and Huntington’s Disease (HD) multidisciplinary clinics, and is actively involved in the treatment of patients with movement disorders, neuromuscular disorders, epilepsy, MS, stroke, migraines, dementias, and psychogenic diagnoses. She is also engaged in community outreach and support endeavors, including coordination of educational events for patients, in-services for clinicians, first-responders, and community agencies, and speaking engagements with area support groups.

N Nancy Hale
WHAT IS HUNTINGTON’S DISEASE ADVOCACY?

Nancy Hale, a retired attorney, has been the caregiver for her husband for more than ten years as his Huntington's disease symptoms have progressed. She has been very involved in the Huntington's Disease Society of America Tennessee Chapter since its founding in 2013, serving as President for several years.

M MaryAnn Emerick
WHAT IS HUNTINGTON’S DISEASE ADVOCACY?

MaryAnn Emerick recently joined the HDSA Mission team as the Manager of Youth & Community Services. Prior to joining the HDSA team, MaryAnn was the program director of the Huntington’s disease unit at Archcare Terence Cardinal Cooke Health Care Center. She is no stranger to the HD community and has been an active volunteer for the past 10 years, as board member of her local chapter and participated within the HDSA NYA. MaryAnn loves to share her professional and personal experience in order to help and support others affected by HD, however she can.

1602178748-848e47fd61cb188a Daniel Claassen, MD
THE LATEST IN HD RESEARCH

Dr. Daniel Claassen is an Associate Professor of Neurology at Vanderbilt University Medical Center and a neurologist specializing in the care of patients with neurodegenerative disorders, with particular interest in patients with cognitive dysfunction and movement disorders. He earned his medical degree from the Medical College of Georgia and completed his Neurology residency training at the Mayo Clinic, in Rochester, MN and postdoctoral training at the University of Virginia, in Charlottesville, VA. He is a past recipient of the American Academy of Neurology clinical research training grant, and his work is currently funded by the National Institutes of Health. He is the Director of the Level 1 HDSA Huntington Disease Interdisciplinary Clinic at Vanderbilt University Medical Center. Additionally, he is the Principle Investigator of research studies and clinical trials in both Parkinson and Huntington’s Disease.

1602079908-d17cf76e2ac07e9e Katherine McDonell, MD
THE LATEST IN HD RESEARCH

Dr. Katherine McDonell is Assistant Professor of Neurology specializing in neurodegenerative disorders. She received her undergraduate degree from Washington University in St. Louis and earned her medical degree at Northwestern University. She completed her residency training in neurology at Beth Israel Deaconess Medical Center in Boston, MA. She subsequently completed a fellowship in cognitive neurology and a Master’s of Science in Clinical Investigation before joining the neurology faculty at Vanderbilt.
Clinically, Dr. McDonell sees patients with cognitive and movement disorders including Alzheimer’s disease and other dementias, Parkinson disease, and Huntington disease. She is a core faculty member of the Vanderbilt Level 1 Center of Excellence for Huntington disease and directs the predictive genetic testing program for Huntington disease at Vanderbilt. Dr. McDonell's research focuses on early cognitive and behavioral changes in young adults at risk for Huntington disease. She is also involved in several clinical trials investigating new treatments for Huntington disease.

1602080050-428cfbb4a7b7b41a Victor Sung, MD
THE LATEST IN HD RESEARCH

Dr. Sung is originally from Houston, TX and completed his undergraduate degree in Neuroscience from Vanderbilt University. He completed medical school at UT-Southwestern Medical Center at Dallas and completed neurology residency and movement disorders fellowship at UAB. He joined faculty in the UAB Department of Neurology, Division of Movement Disorders and has the rank of Associate Professor with Tenure. He is the Director of the UAB Huntington's Disease Clinic, Co-Director of the UAB School of Medicine Neuroscience Module, and is the Director of the Birmingham VAMC Deep Brain Stimulation Program. He serves on the Board of Trustees of the Huntington's Disease Society of America.

1603382142-c8b7e5db65357435 Laura Dixon
UNIVERSITY OF LOUISVILLE SCHOOL OF MEDICINE

Laura Dixon is a nurse practitioner in the Movement Disorder Clinic at the University of Louisville and is the co-director and coordinator for the HDSA Center of Excellence. At UofL, she provides comprehensive care for patients with Huntington’s disease, Parkinson’s disease, essential tremor and other movement disorders. She earned master’s and doctorate degrees in nursing from Frontier Nursing University in Kentucky and holds a master’s degree in public administration from The University of Louisville Dr. Dixon is a member of The Huntington Study Group, The American Academy of Neurology, The International Parkinson and Movement Disorder Society, The American Academy of Nurse Practitioners, and The Kentucky Association of Nurse Practitioners and Nurse Midwives.

1603382271-c146f2788074960a Peter Hedera
VANDERBILT UNIVERSITY MEDICAL CENTER

Dr. Hedera is a movement disorder neurologist and medical geneticists who treats patients with Huntington’s disease in the HD Center of Excellence at the University of Louisville. He is interested in genetics of HD and new therapeutic approaches

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Lisa Hale
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