Board of Trustees

To contact any member of the HDSA Board of Trustees please send an email to  trustees@hdsa.org

Arik Johnson, Psy.D

Chairman

Arik Johnson, Psy.D

Dr. Arik Johnson is the Staff Psychologist at the HDSA Center of Excellence at UCLA and the Fenton Coordinator of the Atypical Parkinsonisan Disorders Clinic.  Dr. Johnson received his doctorate in Clinical Health Psychology from the California School of Professional Psychology.  While completing an internship in the Behavioral Medicine Clinic at UCLA, he first joined the Department of Neurology doing research in Huntington’s disease.  Today, he provides clinical services to patients and families living with Huntington’s disease, Parkinson’s disease, and atypical Parkinsonian disorders.

Dr. Johnson has been an active member of the HDSA Los Angeles Chapter, currently facilitating the Los Angeles support group.  He has presented at the HDSA National Convention, numerous HDSA Chapter educational events across the country, and Caregiver’s Corner webinars.  Dr. Johnson has served on several HDSA task forces, including the National Field Committee, the National Field Task Force, the Strategic Planning Committee, and collaborated on the revision of Understanding Behaviors in Huntington’s Disease.

EJ Garner

Chair Elect

EJ Garner

E.J. is the grandmother of twin granddaughters who are at-risk of Huntington’s disease.  The girls’ brother and her grandson, Matthew, died at age 6 from Juvenile HD in May 2008.  Her son, Scott, died at age 44 from complications of HD in January 2015 as well as her former husband, Doug, also died from HD in 2002.    A long-time resident of Southern California, E.J. recently moved to Olympia, WA with her husband, Art, to be close to her granddaughters and daughter-in-law.

E.J. has been active in HDSA since 2006.  She served on the board of the HDSA-Orange County chapter from 2008 – 2013 and as Chapter President from 2010 – 2012.  She was name HDSA-OC Volunteer of the Year in 2011 and was recognized as one of the top fundraisers of HDSA Team Hope Walk in 2013 and 2015.

After 40 years with Toyota Motor Sales, U.S.A., Inc. she recently retired from a career of various management positions including, administration, marketing, merchandising, and distribution/logistics.  E.J. holds a Bachelors of Science degree from University of Redlands (CA).

In tribute to her son and grandson and in an effort to raise awareness and funds for the fight against HD, E.J. embarked on the 554 mile Camino de Santiago pilgrimage in mid-August 2015. Walking the entire route with a 23-pound backpack, she raised more than $16,000 for HDSA Team Hope Walk.  Her next trek will be walking to the 21 California Missions (approximately 800 miles).  She will walk to the ends of the earth to raise awareness of Huntington’s disease and to raise funds for research, education and family services.

Daniel S. Vandivort

Treasurer

Daniel S. Vandivort

Dan Vandivort currently serves as an Independent Director on the board of Oppenheimer Funds, where he is a member of the Audit, and Regulatory and Oversight Committees.  Mr. Vandivort previously was Chairman, Lead Independent Director and Chair of the Audit Committee on the board of Value Line Funds.  Prior to that, Mr. Vandivort was the President and Chief Investment Officer of Robeco, Weiss, Peck and Greer and also served as Chairman on the board of Weiss, Peck and Greer Funds.  Mr. Vandivort obtained his MBA in Finance from Columbia University Graduate School of Business and a BA from Antioch College.

 

Mr. Vandivort served on the national HDSA Board of Trustees for 6 ½ years through December 2013 and rejoined the board in January 2015.

Jennifer Leyton

Secretary, New York, NY

Jennifer Leyton

Jennifer Leyton is a loving mother and wife and committed volunteer.  After working on Wall Street for almost 20 years as a financial analyst and business manager, she decided to leave her career and devote her energy to family and causes that are closest to her heart.

Jennifer holds a BBA from Emory University and an MBA from Rutgers University.  Professionally, she has worked at Arthur Andersen, Credit Suisse, and Deutsche Bank, where she spent the last 13 years of her career.

Greater than Jennifer’s professional accomplishments, she is most proud of her children and the work that she does for others and the community.  She is an active volunteer at her children’s schools and Temple Emanu-El in New York City.  Additionally, Jennifer is Vice President of her building’s Condominium Association.

Jennifer is at risk for Huntington’s disease.  She lost her grandmother, mother, and younger brother to HD.  Jennifer is a Board of Trustees member and the Secretary of the Huntington’s Disease Society of America. She also sits on HDSA’s Audit and Finance and Investment Committees.  In addition to working with HDSA, Jennifer lectures to medical students and healthcare professionals about the effects of HD and patient care.  She also volunteers in the Huntington’s Unit at the Terence Cardinal Cooke Health Care Center.  Jennifer and her husband, Mark, are the co-chairs of the Strike Out HD event in New York City.  She regards the HD community as an extension of her family.  It is a community that allows Jennifer to foster her love for volunteering, while helping and advocating for those who are affected by the disease.

Jang-Ho Cha, MD, Ph.D

Past Chair Cambridge, MA

Jang-Ho Cha, MD, Ph.D

Dr. Cha currently serves as Chairman of HDSA’s National Board of Trustees and is the Global Head Translational Medicine, Neuroscience at Novartis Institute for BioMedical Research. Dr. Cha obtained his M.D and Ph.D. from the University of Michigan and did his residency in Neurology at Massachusetts General Hospital in Boston, MA. During his career at Massachusetts General Hospital at the New England HDSA Center of Excellence, Dr. Cha held multiple positions culminating in Associate Professor of Neurology.

Active in the HD community, he has held several leadership positions, such as Chair of the Gordon Research Conference on ‘CAG Triplet Repeat Disorders’ and chair of the Huntington Study Group HD Clinical Research Symposium. Internationally he has worked with the US-Venezuela Collaborative Huntington’s Disease Project for Hereditary Disease Foundation and with the Huntington Study Group. Dr. Cha is a regular speaker for the Huntington’s Disease Society of America and has presented regularly at the Annual HDSA Convention, local Chapter educational events and support groups and on a Caregiver’s Corner webinar.

Dan Brennan

Dan Brennan

Chief Operating Officer
Edge Therapeutics
Berkeley Heights, NJ

Stacy Coen

Stacy Coen

Head of Rare Disease Business
Development & Licensing
Sanofi Genzyme
Cambridge, MA

Hugh DeLoayza


Hugh DeLoayza


Hugh de Loayza is from San Francisco, California. He has been involved with the HDSA for over 5 years and has been nominated as the HDSA Person of the Year in Northern California and was recently awarded the National HDSA award for exemplary fundraising, which recognized his coordination of two Mafia Wars campaigns to raise funds for and awareness of HDSA. He also led the most successful Team Hope Walk team in 2010.

 

Hugh is an executive in the video games industry having worked for Zynga, Electronic arts and Sony. You have likely payed one of the games he has been involved with.

 

He studied Cinema at San Francisco State University.

 

When not fundraising or working he can usually be found surfing or goofing around with his two kids.

Gerald Francese, Esq.

Gerald Francese, Esq.

Gerald Francese concentrates his legal practice in financial services, private equity, corporate finance, and bank and investment adviser regulation.  Mr. Francese has managed businesses and legal teams involved in all aspects of investing and investment management in over 40 countries across the Americas, Europe, Latin America and Asia Pacific.

 

In his charitable roles, Mr. Francese is a trustee of the Huntington’s Disease Society of America, Chair of the Board of Directors of The Barrier Free Living Family of Companies, and a member of the Board of Directors of the Lawyers Alliance for New York; and he serves as pro bono counsel to numerous charities whose missions improve the lives of New Yorkers and Veterans, and support international causes.

Samuel Frank, M.D.

Samuel Frank, M.D.

Dr. Samuel Frank is a movement disorder neurologist at Beth Israel Deaconess Medical Center (BIDMC), a teaching hospital for Harvard Medical School.  During and since completing his fellowship at the University of Rochester, he has been involved in Huntington Study Group clinical trials, Enroll-HD and other studies focused on HD.   He has an active multidisciplinary HD clinic at BIDMC and also serves as the inpatient neurology consultant for the specialized HD service at Tewksbury State Hospital.  In addition to his commitment on the National HDSA Board as the chair of CPEAC (Center Programs Education and Advisory Committee), Dr. Frank has been involved with HDSA through the New England Regional HDSA Chapter and served as the chair of the National HDSA Education Subcommittee.

Michelle Gray, PhD

Michelle Gray, PhD

Dr. Michelle Gray is currently an Assistant Professor in the Department of Neurology at the University of Alabama at Birmingham. She is the Dixon Scholar in Neuroscience, focused on the study of Huntington’s Disease. Dr. Gray earned her Ph.D. from the Ohio State University and performed post-doctoral training at the University of California, Los Angeles.

 

Dr. Gray is a laboratory scientist who has worked on Huntington’s Disease for the last 10 years. She has been an invited speaker and presenter of her work at multiple Huntington’s Disease focused meetings including those sponsored by the Hereditary Disease Foundation and CHDI,Inc. In addition, she has presented updates on Huntington’s Disease to the Alabama Academy of Neurology and participated in Huntington’s Disease Education Day sponsored by the HDSA Center for Excellence at the University of Alabama at Birmingham.

Donald Higgins, M.D.,

Donald Higgins, M.D.,

Donald S. Higgins, Jr., MD is the National Director of Neurology for the Veterans Health Administration.  He has oversight responsibility for VA Neurology services and programs including the Center of Excellence programs in Epilepsy, Multiple Sclerosis and Parkinson’s Disease & Movement Disorders.  Prior to his current role he served as the Chief of Neurology at the Stratton VA Medical Center in Albany, NY and Professor of Neurology at the Albany Medical College.  Dr. Higgins received his medical degree from Stony Brook University, neurology training at the University of Michigan (Ann Arbor) and fellowship in the Movement and Inherited Neurologic Disorders Unit at the University of Rochester, NY. He is a fellow of the American Neurological Association, and member of the American Academy of Neurology and Movement Disorder Society. He has been an active supporter of the Huntington Study Group, the Cure Huntington’s Disease Initiative and HDSA with many years of service on the Center Programs Education and Advisory Committee.

Bill Kline

Bill Kline

Bill is the father of two at-risk daughters whose mother died from complications of HD in 2005.

 

Bill graduated from Susquehanna University with a degree in Business Administration.  He worked for IRS as a Revenue Officer, Collection group manager, program analyst, instructor, and tech support for case management software.  He retired in 2006 after 34 years of service.

 

Bill has been active in HDSA functions since 1997.  He served on the Georgia Chapter Board from 2000 through 2006 and again since 2012.  He is currently in his third term as chapter president.

Michael Roth

Michael Roth

Michael Roth is Head of the Healthcare Practice at Bliss Integrated Communication, where he is responsible for the strategic evolution, digital and social integration and hands-on program development of the firm’s healthcare portfolio. Michael has more than 20 years of corporate and product communications experience across pharmaceutical, biotechnology, healthcare services and medical technology—including device and diagnostics.  Prior to joining Bliss, Michael held executive positions on both agency and client side at Novartis Corporation, GCI/Grey (WPP), Twist (W20/WCG), and his own boutique agency, BMC Communications Group.  He also has deep experience in challenging therapeutic areas in the rare disease space, including Huntington’s disease, Gaucher disease, amyotrophic lateral sclerosis (ALS), Parkinson’s disease (PD) and pulmonary hypertension (PH).  Michael is a lawyer by education, a struggling jazz pianist and an avid Mets, Knicks, Jets and Islanders fan.

Arvind Sreedharan

Arvind Sreedharan

Mr. Sreedharan has more than 26 years of pharma experience in commercial roles of increasing responsibility at Novartis, Abbott Laboratories, Ovation Pharmaceuticals, Lundbeck, Auspex Pharmaceuticals and Avexisbio . Mr. Sreedharan has significant experience in the CNS and orphan disease space. Most recently, he served as Vice-President of Marketing at Auspex Pharmaceuticals and prior to that as Director, Movement Disorders at Lundbeck. Mr. Sreedharan played a key commercial role in the successful product launch and management of Xenazine®, the first and only FDA-approved drug for the treatment of chorea associated with Huntington’s disease. At Auspex, he served as the Commercial lead for all pre-launch activities for SD-809 (Austedo®) for chorea associated with Huntington’s disease.At AveXis bio, Mr. Sreedharan leads key business/pre-commercialization activities in the areas of market research/market analysis, key opinion leader development, professional communications and advocacy relations for the proprietary gene therapy candidate, AVXS-101 for Spinal Muscular Atrophy.

Victor Sung, MD

Victor Sung, MD

Director, UAB Huntington’s Disease Clinic
University Alabama Hospital Neurology
Birmingham, AL

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