Patient and Provider Symposium:

Huntington’s DiseaseResearch, Resources, and TreatmentsA RI Family Education Day

Saturday, April 12, 2014Ray Conference CenterButler Hospital9:00 am – 1:45 pm

Presenters:Joseph Friedman, MDA neurologist and recognized expert in Parkinson’s disease, Dr. Joseph H. Friedman is Chief of the Butler Hospital Movement Disorders Program. He received his medical degree from the Columbia University College of Physicians and Surgeons and completed his residency in neurology at the Neurological Institute of New York. A professor and chief of the division of Movement Disorders in the Department of Neurology at The Warren Alpert Medical School of Brown University and adjunct professor in the School of Pharmacy at the University of Rhode Island, Dr. Friedman is a recognized clinician, researcher, and educator in the treatment and study of Parkinson’s and related movement disorders.Samuel Frank, MDDr. Samuel Frank is Associate Professor of Neurology and Co-Director of Neurology Resident Education at Boston University. Since completing his fellowship in Experimental Therapeutics (Movement Disorders) at the Uni-versity of Rochester, he has established active Huntington’s Disease clinics at Boston University and the New England regional VA hospital. He also serves as the inpatient neurology consultant for the Huntington’s Disease service at Tewksbury State Hospital, a state run chronic care hospital. Herminia Diana Rosas, MDDr. Rosas is Associate Professor in the Neurology and Radiology depart-ments, and Co-Director of the HDSA Center of Excellence, as well as the Director of the Center for Neuroimaging of Aging and Neurodegenerative Diseases at Massachusetts General Hospital, affiliated with Harvard Medical School. Her research focuses primarily on the development of biomarkers for use in the study of neurodegenerative diseases, to better characterize pro-gression and to understand the correlations of genotype/phenotype, as well as to apply innovative imaging strategies to clinical trials, which help explain differences in disease progression.Peter Snyder, PhDDr. Snyder is Vice President of Research for Lifespan and its partners where he oversees the research strategy, development and function at Rhode Island, The Miriam and Bradley hospitals. In addition to his role at Lifespan, Dr. Snyder also holds the position of professor of clinical neurosciences (neurolo-gy) at The Warren Alpert Medical School of Brown University.Diane Lipscombe, PhDDr. Lipscombe earned her Ph.D. in Pharmacology at University College, London, completing post-doctoral fellowships in ion channel research at Yale University and Stanford School of Medicine. She is professor of neuro-science at Brown University, where she studies ion channel mechanisms that impact neuroplasticity and neurotransmission in the mammalian brain. She is co-director of a newly formed center at Brown which will explore neurode-generative mechanisms in a multi-faceted approach to research on the pro-cesses of the brain encompassing several departments within the University.Steven Hersch, MD, PhDDr. Steven Hersch is Director of the Huntington’s Disease Center for Excellence at Massachusetts General Hospital, where he is also on staff as a Neurologist. His areas of clinical and research interest are Huntington’s Disease, and other neurodegenerative diseases. He has both a PhD and an MD from Boston University.Stanley Aronson, MDAfter earning his medical degree from Columbia University, College of Physicians and Surgeons, Dr. Aronson served in the Columbia Univer-sity Departments of Neurology and Neuropathology, where he was also an instructor. He also served at the NY University College of Medicine, Downstate Medical Center as Assistant Professor of Pathology, Department Chair, and Assistant Dean. He has been with the Brown University School of Medicine as a Professor of Medical Science, Chairman in the Department

of Pathology and Laboratory Medicine, and Dean of Medicine [founding dean], where he still serves as professor and Dean Emeritus. He has also served at Yale, Tufts, and Dartmouth Medical Schools, among others in the U.S. and abroad. He has served as consultant physician to Rhode Island Hospital, Roger Williams General Hospital, Butler Hospital, Memorial Hospital, the VA Medical Center RI, Women & Infants, RI Medical Center, and several hospitals in New York. Gene Veritas, aka Kenneth Serbin, PhDKenneth Serbin’s mother died of Huntington’s disease in 2006 after a 20-year battle against the disease. Kenneth tested positive for HD in 1999. His daughter Bianca tested negative for HD in the womb and is today a healthy 13-year-old eighth grader. Since 1998, Kenneth has served as a vol-unteer advocate for the Huntington’s Disease Society of America (HDSA), with membership on the San Diego chapter board from 1998-2010. Adopting the pseudonym “Gene Veritas,” in January 2005 he started the blog “At Risk for Huntington’s Disease” (www.curehd.blogspot.com), where he has posted more than 170 articles about the disease and living at risk. Starting in 2007, he initiated the effort in California to obtain fund-ing for HD research from the state’s world-leading stem cell institute. In 2011, he went public about his gene-positive status by keynoting the 6th annual HD Therapeutics Conference of the CHDI Foundation, Inc. That year he was also named the HDSA Person of the Year. In November 2012 he took his definitive step out of the “HD closet” by publishing an essay titled “Racing Against the Genetic Clock” in The Chronicle of Higher Education. Serbin lives with his wife Regina and Bianca in San Diego. He chairs the history department at the University of San Diego. He obtained a BA in history from Yale University and a PhD in Latin American history from the University of California, San Diego.Ben Howarth, CASLBen Howarth provides knowledge and value to his clients while exemplifying the utmost standards of professionalism and integrity. One of his areas of expertise is working with families that have a dependent with special needs. Ben received his Bachelor of Science with a concentration in finance and a double minor in Communications and Legal Studies from Bryant University in Smithfield, RI. He is a resident of Griswold, CT and enjoys spending his free time with family and friends. He is a member of several industry associations including Million Dollar Round Table (Quarter of the Table), the National Association of Insurance and Financial Advisors and has earned his Certified Advisor for Senior Living designation. He works at the Barnum Group, a division of MetLife.Geoffrey Schoos, EsqFor over sixteen years, Geoff Schoos has worked to provide legal services to all Rhode Islanders. In 1998, he founded RI Center for Law and Public Pol-icy as a non-profit legal services organization dedicated to serving tradition-ally under-served populations. Since that time, RICLAPP has provided and continues to provide legal services in a variety of civil legal needs including estate planning, Social Security disputes and appeals, Medicare and Medicaid appeals, tenant defense in landlord/tenant disputes collection issues and for-profit/non-profit small business creation and on-going support services.Karen Baker, MSW, LICSWKaren Baker is a clinical social worker who is employed by the Huntington’s Disease Society to assist families in the greater Massachusetts, Southeastern New England Region. She has presented many workshops on family resourc-es and has helped to train hospital and nursing home staff and professionals to better deal with Huntington’s Disease in their patient populations.Maureen Hebert, MSWMaureen Hebert is a licensed, clinical social worker who has many years counseling experience. She has led support groups for the RI Chapter of the Huntington’s Disease Society for many years, including the local HD caregiver’s support group.

Presentation summaries and learning objectives

Research Advances in Imaging inHDJoseph Friedman, MDDr. Friedman will describe a collaborative research project with colleagues in Connecticut, which examined magnetic resonance images of individuals in the early stages of Huntington’s and identified significant patterns useful in determining diagnoses in the prodromal phase of the illness.Learning objectives:• Identify magnetic resonance imaging as a way of diagnosing early onset

Huntington’s• Understand implications for future research in early diagnoses

utilizing MRI

From Testing to Treating: HD Through the DecadesSamuel Frank, MDDr. Frank will present an overview of Huntington’s research through the past several decades, highlighting advances in both diagnoses innovations and treatment, and an overview of current best practices in the alleviation of the most common symptoms of HD.Learning objectives:• To learn about the HD gene testing process.• To increase awareness of common social issues physicians address as

HD progresses.

Rethinking Clinical Trials in Huntington’s DiseaseHerminia Diana Rosas, MDDr. Rosas’ presentation will outline the latest innovations in neuroimaging to ascertain why some individuals progress faster than others with Huntington’s Disease. Biomarkers related to genotype are crucial for studying Hunting-ton’s and research depends on the participation of families in clinical trials. New computational approaches make studies more efficient in utilization of data to determine the efficacy of novel therapeutic compounds.Learning objectives:• To learn about new clinical research in Huntington’s Disease.• To identify ways clinical trials can expand in scope to advance genetic data

and treatment.

Executive Functioning in Prodromal Huntington’s DiseasePeter Snyder, PhDDr. Snyder’s presentation will describe the most common changes in indi-viduals who are first diagnosed with Huntington’s disease, particularly the cognitive issues and symptoms that occur in the onset of the illness. How these symptoms are assessed.Learning objectives:• Understand the most common cognitive complaints and changes in

Huntington’s disease.• Understand which cognitive symptoms tend to occur in the very earliest

stages of the disease.• Learn how cognitive measures and assessment are being used to discover

and test new treatments.

Genetic, Molecular and Cell-Based Studies of Neurodegenerative DisordersDiane Lipscombe, PhDDr. Lipscombe’s talk will describe current biological research in neurodegen-eration taking place over several labs at Brown University, where the speaker serves as Chair of a newly formed center examining brain degeneration as impacted by various disease processes.Learning objectives:• Identify advances in stem cell research relevant to Huntington’s and other

neurodegenerative diseases.• Identify genetic factors implicated in neurodegeneration in fruit flies and

small mammals that implicate factors in humans.• Learn about molecular research focused on movement degeneration in

lab studies.

Biomarkers to Help Us Understand What Goes Wrong in Huntington’s and to Identify Potential New Targets for TreatmentsSteven Hersh, MD, PhDDr. Hersch’s presentation will highlight the ways in which different biomarkers for Huntington’s Disease informs targeted treatments for individuals with different genotypes. The types of targeted treatment trials underway and their efficacy to date will illustrate this trend in understand-ing and treating HD.Learning objectives:• To identify biomarkers, both imaging and blood based, that provide early

signatures in disease progression.• To identify ways these biomarkers are impacting current trends in treat-

ment for HD.

Huntington’s Disease through HistoryStanley Aronson, MDHuntington’s disease, an uncompromising, hereditary disorder of the central nervous system, has knowingly afflicted humanity as long as observers have exploited the skills of literacy. The disease is a dominant trait and in its fully expressed clinical form will be increasingly evident to the patient, his family and even to his community. Through history, sadly, this choreic disorder has been misinterpreted and its victims have been unduly maligned and ostracized. Dr. Aronson’s presentation will describe the historic settings as Huntington’s disease has been part of the medical landscape of this nation from its early colonial beginnings.Learning objectives:• Understand that the HD gene is more evident in certain ethnic popula-

tions and not in others.• Identify ways in which HD patients have been maligned and mistreated

in different historical periods and contexts.

Opportunities for HD AdvocacyGene Veritas, aka Ken Serbin, PhDAdvocacy by individuals and families affected by Huntington’s disease is a crucial part of the effort to improve care and to accelerate the drive for treat-ments. Many families remain in the terrible and lonely “HD closet,” unable to tell their stories. This hinders the effort to build awareness, raise funds, and involve people in critical research studies and clinical trials, which are the final big step in developing treatments. Individuals and families who exit the closet and speak out about HD have a large spectrum of activities that allow for strengthening the cause: participation in support groups and local chapters of the HDSA and other HD organizations; advocacy for critical new treatments in fields such as stem cell research; support for legislation to improve care norms and facilities as well as federal legislation to revise the Social Security law to more effectively meet the needs of HD families; telling their stories to media outlets; and many others. The speaker will

briefly describe his own experience as an advocate and outline ways in which individuals and families can take part in the cause.Learning objectives:• Identify several ways patients can contribute to health advocacy, research,

and legislation.• Understand reasons why families with HD remain closeted and the way

this decreases demands for improved care.

Your Dependent with Special Needs: Making Their Future More SecureBen Howarth, Financial Planner, MetLifeFamilies with children and other dependents with special needs, no matter what the age or disability, face many serious questions about how to best prepare for their future well-being. This workshop addresses such critical issues as protecting government benefit eligibility for Supplemental Security Income (SSI), creating Special Needs Trusts, and the importance of a will. Taking steps now can help arrange for a loved one’s well-being today and tomorrow.Learning objectives:• Understand the SSI rules governing trusts and income for dependent

family members• Identify two ways to protect assets when faced with chronic health issues,

wills and trusts.

Legal Issues and Ethics Surrounding HD TestingGeoffrey Schoos, EsqTesting for HD brings up concerns about privacy, not only for the individual tested, but for family members whose health privacy is implicated. Extended family members impacted by the choices of one individual, and the ways testing creates consequences and issues beyond the individual are discussed.Learning objectives:• Understand basic information on HIPPA privacy guidelines.• Understand the privacy consequences of a decision to test, for family

members and extended family members.

A Preventative Approach to Gathering Family SupportKaren Baker, MSW, LICSWKaren Baker’s workshop will cover advanced directives, use of a health care proxy, and ways to assist families impacted by Huntington’s to take a proactive approach to finding as much support as possible. Tools and resources available for families will be suggested, as well as how to talk about HD to children.Learning objectives:• Learner will identify three complimentary resources of HDSA (online

webinars, local support groups, printed educational materials, helpline).• Learner will identify three communication tools to assist with Advanced

Directives (health care proxy, etc).

Last But Not Least, CaregiversMaureen Hebert, MSWThis discussion will focus on the caregiver, his or her needs in the process of caring for a loved one with Huntington’s Disease, psycho-social issues and stressors, and coping strategies caregivers can apply to their own emotional needs. This workshop will highlight how the grief for loved ones often begins in the caretaking phase, and can be manifested by symptoms of depression and anxiety as well as apathy or anger on the part of the caregiver.Learning objectives:• To discuss issues related to grief as the caregiver ministers to the need of the

loved one with HD. Identify how the gradual loss of the loved one due to symptoms of HD is indeed a grief issue long before the person passes.

• To discuss the importance of the needs of the caregiver. Identify the im-portance of reaching out for support and assistance, ie., individual therapy, support groups, on-line blogs etc. with focus on the needs of the caregiver.

Continuing Educational CreditsSocial Workers: Application for 3 continuing education credits has been made to the Rhode Island Chapter of the National Association of Social Workers CEU Collaborative.

Mental Health Counselors: This program is pending approval for 3 con-tact hours for Mental Health Counselors and Marriage & Family Therapists. “Continuing education programs sponsored or approved by the following organizations [including NASW], are deemed to be approved by the Board.”

www.hdsa.org/riSymposium Fees:

Individuals:

This event is funded by the Huntington’s Disease Society of America (HDSA) through an unrestricted educational grant from Lundbeck

Thank you to our sponsor, Lundbeck, for their generous support.

Thank you to our co-sponsors

MovingTogether