FOR IMMEDIATE RELEASE
Contact: Mynelly Perez, Director of Marketing & Communications
(212) 242-1968 ext. 214
MPerez@hdsa.org
The Huntington’s Disease Society of America Welcomes Jenne Coler-Dark as New Chair of the Board of Trustees
New York, NY – December 16, 2024– The Huntington’s Disease Society of America (HDSA) is proud to announce Jenne Coler-Dark as the new Chair of the National Board of Trustees. Jenne brings a wealth of personal experience, professional expertise, and a deep commitment to the Huntington’s disease (HD) community to her new role.
Jenne’s connection to Huntington’s disease is deeply personal. In 2014, she learned that HD was in her family. The following year, Jenne, her mother, and her sister tested positive for carrying the HD gene. Her two children remain at risk for the disease. Despite the challenges of her diagnosis, Jenne was determined to make a difference. She became an active advocate for HD awareness, fundraising, and patient support, joining HDSA’s National Board of Trustees in 2017. Over the years, she has chaired multiple committees and played a pivotal role in advancing HDSA’s mission.
“We cannot direct the wind, but we can adjust the sails,” Jenne often reminds others, quoting Dolly Parton. This philosophy underscores her positive approach to life and her dedication to leading the HD community toward hope and progress.
Professionally, Jenne is an accomplished leader with nearly 20 years of experience at Experian, where she currently heads marketing for their Fraud and Identity business. She graduated from the University of San Francisco with a degree in International Business and brings her strategic insight and collaborative spirit to her role at HDSA.
Jenne lives in Southern California with her husband and two children. Outside of her professional and advocacy work, she enjoys traveling, cheering on her children at soccer games, and exploring her creativity in the ceramics studio.
“Jenne’s passion and dedication to the HD community are unmatched,” said Arik Johnson, PsyD, Interim CEO/Chief Mission Officer “Her leadership will undoubtedly guide us as we continue to support families affected by HD, raise awareness, and fund critical research.”
HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. Under Jenne’s leadership, the organization is poised to expand its reach and impact, bringing hope to families nationwide.
For more information about HDSA and its mission, please visit www.HDSA.org
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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The symptoms of HD are described as having ALS, Parkinson’s & Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800)345-HDSA.
