We would like to give a special thanks Nicole Villas for volunteering on DSF’s Board of Directors and for her contributions over the last 6 years. Nicole joined the board in April 2015, serving as president since 2016. In addition to leading the board, Nicole also served as Scientific Director. In this role, she served as liaison between researchers, professionals, and families, and wrote lay-person reviews of published literature to help caregivers better understand research and how it related to their patients.

As I step down from the Board after two full terms, I am proud of the work DSF has accomplished in the past 6 years thanks to an incredible network of volunteers, dedicated staff and Board, incredible Executive Director, and the support of the community. Thank you, everyone, for progress toward better treatments and a cure for Dravet syndrome!” – Nicole Villas

With Nicole’s departure, Kate Hintz has taken the role of President. Kate joined the board in June 2017 and has served as the Secretary for the past three years.

Kate’s daughter Morgan was diagnosed with Dravet syndrome at only 6 months old.  Although they received an early diagnosis, Morgan was medically fragile for the first 2 years of life, suffering frequent seizures and related medical complications. Her family turned to organizations like the Dravet Syndrome Foundation for guidance and support. The outreach and leadership of the organization inspired Kate to get involved in advocacy work.

She joined Compassionate Care NY in 2013, a group raising awareness for patients using or in need of medicinal cannabis in New York state. She currently volunteers as State Director. Prior to this, Kate spent 10 years in the wedding gown industry focusing on production and logistics for companies such as Pronovias, Priscilla of Boston, Reem Acra, and Marchesa. She graduated from the Chicago Academy for the Arts, a performing arts high school, and is passionate about supporting young artists. She lives Westchester County, NY and enjoys exploring the Husdon Valley with her husband and Morgan.

We are also excited to welcome incoming board member, Ross Nichols, who will serve as Secretary.

Ross lives in Atlanta, GA with his wife Polly and their three children Millie, Finn, and Henry – who has Dravet syndrome. Henry was diagnosed in March 2008. He had his first seizure at 3 months, lasting over an hour. By his second birthday, Henry had spent over 70 days in the hospital: often in pediatric intensive care after prolonged seizures. Henry was so little, and Ross and his family had no idea how to help. Fortunately, the family was able to connect with a wonderful group of parents, doctors, and other caregivers to work together and treat the symptoms of the disease. Every rare disease needs a champion and DSF is a great one. It is because Ross has benefitted from the past efforts that he feels honored to serve where he can.

Ross is a business consultant, and he applies this broad set of business, operational, and personal experiences to his role on the board. Ross describes his life as messy and full. In his free time, he enjoys chasing his children, squeezing in a workout, run, or a round of golf when he can.

You can learn more here about all of our wonderful volunteers who serve on our Board of Directors do so on a voluntary basis, without compensation. We appreciate each of them sharing their gifts and talents to strenthen and grow the organization. If you are interested in serving on our Board, please email us for additional information.