Colleen and her husband, David, live in Madison, Wisconsin and are proud parents to three adult children, one of whom lives with Dravet syndrome. Colleen’s education is in journalism and marketing. In her early career, she worked at public relations agencies in Minneapolis and Madison and had a small consulting firm. A consummate Jane-of-all-trades, her […]
Colleen Murphy Penwell – WI (Midwest) Read More »
Tina’s son Ryan was diagnosed with Dravet Syndrome at the age of six but had been having seizures from nine weeks old. It took 3 different Neurologists to figure it out. Tina has shared and will continue to share her story and that is why she became an Ambassador for the Midwest Region. Unfortunately, Ryan
Tina McDermott – IA (Midwest) Read More »
Jen is originally from Hollidaysburg, Pennsylvania, and her family currently resides in Verona, PA (near Pittsburgh). She and her husband Chris have been married since 2014 and have two beautiful daughters: Maggie, age 6, and Cora, age 3. Cora was diagnosed in 2021 at 9 months young with Dravet Syndrome. Jen is a licensed geriatric
Jennifer Marasco-Kuhn – PA (Northeast) Read More »
Kayci Capps- MO (Midwest) Kayci is a mom to three amazing kids, Benjamin, William, and Charlotte. She is also a Kindergarten teacher at a local public school. Her husband, Adam, is in the Air Force and they currently live near St. Louis, Missouri. Her middle son, William, was diagnosed with Dravet syndrome at 6 months
Kayci Capps – MO (Midwest) Read More »
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 Batt Nathan lives in Atlanta, Georgia with his wife Whitney, and his two sons: Cooper 5 and Colton 3. Cooper
Welcome to our New Board Members! Read More »
Elaine C. Wirrell, MD – Mayo ClinicDSF Research Award – $75,000 (1 year project)Dravet Syndrome International Consensus Project (funding provide through unrestricted grants from Biocodex, Greenwich Biosciences, and Zogenix) A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with
Dravet Syndrome International Consensus Project Read More »
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
Clare Carey – Secretary Read More »
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
Nathan Batt – Board Member Read More »
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
Josh Goldman – Treasurer Read More »
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
Ross Nicholas – Chair Read More »
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