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.
Victor Sung, MD
Dr. Victor Sung, a native of Houston, TX, graduated from Vanderbilt University with a B.S. in Neuroscience and a minor in music in 2001. He received his medical degree from UT-Southwestern in Dallas in 2005. He completed residency training in neurology at the University of Alabama at Birmingham (UAB) in 2009, during which time he was elected to membership of the Alpha Omega Alpha Honor Society and received the Argus Award for Best Neurology Resident. He currently serves as Director of the UAB / HDSA Huntington’s Disease Center of Excellence, serving more than 200 HD patients across the southeast. The UAB COE was awarded the HDSA Excellence in Clinical Care Award in 2017. Dr. Sung was awarded the President’s Award for Excellence in Teaching in 2018. Dr. Sung has been honored to serve on the HDSA Board of Trustees since 2017.
Arik Johnson, PsyD
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.
Mr. Alam is currently the Senior Vice President, Finance and Principal Financial Officer at Rocket Pharmaceuticals in New York, NY.
Kamran has nearly 15 years of experience in the biotechnology industry. Most recently, Kamran was Vice President, Finance at AveXis, Inc. for 3.5 years where he established and built a finance team. While at AveXis, Kamran led Financial Planning and Analysis, Procurement and Risk Management functions. At AveXis, Kamran also played a pivotal role in successfully executing and closing multiple follow-on financing transactions and in Novartis’ acquisition of AveXis for $8.7 billion. Following Novartis’ acquisition of AveXis, he was appointed Deputy Chief Financial Officer and supported the development and commercialization of Zolgensma and advancement of AveXis’ gene therapy pipeline programs.
His prior biotech industry experiences include Senior Director, Finance and Accounting at Aptinyx, where Kamran held a leadership role in the finance and accounting team. He was also Director of Finance at Naurex, culminating in Allergan’s acquisition of Naurex. Earlier in his career, Kamran held various finance and project management roles with increasing responsibility at Ovation Pharmaceuticals, Lundbeck and Fresenius Kabi.
Kamran received his Bachelor of Business Administration degree with High Distinction from the Ross School of Business at University of Michigan and MBA in Finance from the Kelley School of Business at Indiana University. Kamran is a Certified Public Accountant.
Jenne Coler-Dark is gene positive for Huntington’s Disease and has two children at risk. She found out HD was in her family in 2014 and has been working to advocate for patients, and raise funds for HDSA ever since. In 2016, Jenne along with her family hosted the Freeze HD event in Los Angeles. She continues to participate in the HDSA annual Freeze HD event, along with other HD volunteer engagements with HDdenNoMore, and CHDI.
Jenne graduated from the University of San Francisco with a degree in International Business. She has worked for Experian for the last 13 years in a variety of roles from Professional Services, Account Management, and Program Management.
After living in the Bay Area for over a decade, Jenne and her family relocated back to Southern California to be closer to her mom and sisters.
Mrs. Coen joined Editas Medicine, the world’s leading gene editing company, as Vice President of Business Development in 2017. She has more than 20 years of experience in Corporate and Business Development in the life sciences industry and previously worked at both Genzyme and Sanofi. Stacy has been responsible for partnerships and business transactions in the fields of oncology, transplant, multiple sclerosis, and rare diseases.
Stacy has been involved with HDSA for more than 30 years. Prior to joining the Board of Trustees, Stacy served as Treasurer of HDSA’s Massachusetts Chapter and has participated in many fundraising events, as well as clinical trials in support of the HDSA mission.
She is a married mother of two and enjoys kayaking, running, and photography.
With a true passion for patients and dedication to connecting people in need to resources, services and people, Wendy has built her career in patient advocacy in many rare disease communities and oncology.
Wendy Erler is the Vice President of STAR and Patient Insights and Advocacy at Alexion Pharmaceuticals where she is responsible for building an enterprise holistic solution model to gather and incorporate patient insights throughout the drug development and commercialization processes. She leads the Global Patient Advocacy function and has responsibility the advocacy team. Previously, Ms. Erler was on the executive leadership team at Wave Life Sciences where she led Patient Advocacy and Commercial. During her tenure, she built both functions as the organization initiated three rare disease clinical trials and developed the commercialization strategy. Prior to Wave, Wendy held roles of increasing responsibility at Biogen Idec starting in field sales and advancing through the commercial organization before serving as the patient advocacy lead for several rare disease programs. In these roles she gained experience in Newborn Screening, public policy, HTA’s, and bringing the patient voice into all aspects of drug development.
Wendy graduated from Miami University and earned her MBA from St. Joseph’s University.
Donald Higgins, MD
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.
James Hughes is MGIC’s Executive Vice President of Sales and Business Development. He began his sales career in 1987 in Washington, D.C. as an Account Executive. After moving to California in 1998 as a Sales Manager, he was promoted to Managing Director in 2001 where managed the Pacific Region. He moved to Milwaukee in 2015 to assume his current role. He holds a BS in Finance from the Villanova School of Business.
Jonathan Klein is Chair of the Mergers and Acquisitions Group at DLA Piper in New York City. He concentrates his practice in the areas of mergers and acquisitions, private equity, corporate finance, securities matters and restructuring for both domestic and international clients.
Jonathan has represented public and private companies in negotiated domestic and cross border acquisitions and dispositions (including mergers, stock transactions, asset deals and divestitures), as well as bidders in contested transactions. Jonathan’s private equity experience includes domestic and international leveraged transactions for both financial and strategic parties. His corporate finance experience includes public and private offerings of equity and debt securities.
Jonathan’s general corporate practice includes advising public companies on SEC compliance and reporting issues, internal investigations, joint ventures, licensing and distribution agreements and providing general corporate advice and counsel to public and private companies, partnerships and individuals. He regularly counsels senior management, corporate boards and controlling stockholders with respect to acquisitions, dispositions, buyouts and general corporate and securities matters.
Jonathan has represented US and foreign clients in connection with cross-border acquisitions, divestitures, joint ventures, private financings, loan restructurings and workouts and general corporate matters.
Jonathan received his J.D. from Georgetown University Law Center where he graduated cum laude and his B.S. from Cornell University.
Teresa’s grandmother began battling HD before Teresa’s birth and the disease continues to impact her family including losing her Dad in 1998. Her family started supporting HD families during the CCHD days. Teresa supports her local chapter as a committee member for the IL Walk for Hope and the IL Celebration of Hope. She participates on the Center Programs Education and Advisory Committee and the National Field Committee.
Teresa earned a Bachelor of Science in Psychology and an MBA in her educational pursuits. She works as an IT Project Manager for an agricultural and construction manufacturing company. Teresa along with her husband, Craig give back to HDSA and other charities to recognize their life contains more blessings than negatives.
Leslie Thompson, PHD
Dr. Thompson is a world-renowned HD researcher and currently a professor at the University of California-Irvine School of Medicine.
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.