We are excited to welcome our three new board members who began their 3-year term of service on April 15, 2022. Learn more about them below and join us in welcoming them to #teamDSF!
Nathan lives in Atlanta, Georgia with his wife Whitney, and his two sons: Cooper 5 and Colton 3. Cooper had his first seizure at 7 months of age. He had many subsequent seizures before his he was diagnosed at age 2 with Dravet syndrome, when he was found to carry a SCN1A gene mutation. Nathan and his wife also received genetic testing, and it was revealed that Whitney was a silent carrier of the exact gene mutation. They discovered this when she was 6 months pregnant with their second son Colton. The doctors said there was a 50/50 shot that Colton would also carry the gene mutation. On delivery, Colton was tested, and was found to carry the gene mutation. Colton’s first seizure was also at 7 months, and he received a diagnosis of Dravet syndrome.
Nathan joined the Board of Directors to help advocate not only for his sons, but also for all the current and future individuals, as well as their families, that will have to navigate his condition. His goal is to spread awareness, raise funds, and work with companies to find better treatments, and one day a cure.
Nathan works full time in medical device sales. He enjoys most spending quality time with his family. For recreation, he competes in triathlons during the year. He has been able to turn his triathlon events into an opportunity to fundraise, by soliciting donations through social media. Nathan’s goal is to scale this technique, and recruit numerous others to participate in fundraising during their own race events.
Clare’s daughter, Alexis, had her first seizure before she was three months old. In 2006, at the age of 17 months, she was diagnosed with Dravet syndrome. During this difficult journey, the Dravet Syndrome Foundation has been a lifeline for their family, connecting them to a supportive community and giving them hope for a cure by pushing the research forward.
In March 2011, the Carey family hosted Luck Be Alexis Tonight, a casino night fundraiser for DSF. The fundraiser marked a turning point in coping with a disorder they had little control over. The support they received from their family, friends, and community was incredible. It has become an annual event and a way for them to make a positive impact.
Clare is originally from England. Her professional career began as a dancer, giving her a wonderful opportunity to travel around the world, and ultimately brought her to the United States. She then made a career change, and in 2002 graduated from the University of Utah with a Master’s degree in Physical Therapy. Her career as a physical therapist was short, as she chose not to return to work after Alexis began having seizures.
Clare lives in Boise, Idaho with her husband and three children. They enjoy all the fabulous recreational opportunities around them. Recently, Clare has started drum lessons, which has proved to be mentally stimulating and very therapeutic!
Josh lives in the Boston area with his wife Stephanie and two young children. His family has been personally touched by Dravet syndrome and the tremendous challenges faced by patients and their families. Josh has also witnessed the incredible progress that DSF is making in terms of research and patient outreach.
Josh joined the DSF Board in hopes of helping achieve its mission to find a cure and provide resources to patients and their families. He is an investor at an asset management firm and brings experience around finance, planning, fundraising, and strategy to the DSF Board of Directors.