Our Day of Dravet workshop on Saturday, October 23, beginning at 12:00pm ET, will focus on sessions that will be helpful for families who have an adult patient with the diagnosis of Dravet syndrome. Learn about topics surrounding transition and future planning. Sessions are presented by community experts – including other parents.
Kathy Dodd: Kathy lives with her husband Bob and their 2 daughters, Cameron and Stacy, in a suburb of Chicago. Stacy, now age 23, had her first seizure in January 1999 and was diagnosed with Dravet syndrome in August of 2006. Like so many families, Stacy has endured hundreds of seizures, too many trips to the emergency room, lots of failed epilepsy medicines and many other challenges due to her repeated seizures. Stacy’s determination and strength through all of this, has motivated them to search for a cure for epilepsy. Kathy & Bob attended their first Dravet Conference in August 2006. Since then, she and her husband have attended many other conferences. However, they will never forget their experience attending the first conference as they felt such comfort in meeting so many families struggling with the same things they were, but they were also overwhelmed by the stories of every family and the difficulties they each endured. Because they have lived this journey for over 15 years, they are excited to share their experiences with others. They understand this journey can be very lonely, isolating and overwhelming and we are here to help families in any way, even simply providing an ear to listen or a shoulder to cry on. Kathy and Bob both serve as DSF Family ambassadors and Kathy serves on the Misericordia Women’s Auxiliary board and also is on the Village Board of Wilmette.
Jeff Goering: Jeff grew up in the Philadelphia area, studied Biology at Messiah University and spent the first 15 years of his career with a major pharmaceutical company. While working there, he discovered some strategies being underutilized in finance and founded GOEplan Financial Group in order to serve families and businesses in a unique manner. The same critical thought and creative problem solving required in science, he brought to financial planning. Jeff earned his Chartered Special Needs Consultant designation as a response to the observation that these communities were underserved. This specific type of planning is very meaningful as he and his wife have 11 nieces and nephews with various disabilities (including Dravet syndrome). For over
a decade he has worked to facilitate online meetings in order to make planning more accessible and easier for families and this expands the geography his firm can support. Jeff and his wife Robin have been married 28 years and have 5 children.
Veronica Hood, PhD: Veronica joined DSF in 2020 as their Scientific Director. She has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the University of Colorado. She spent 10 years in laboratory settings researching how small changes in genetic and molecular regulation contribute to complex neurological diseases. In 2007, Veronica had a son, Gabriel, who faced severe developmental challenges. Gabriel presented with initial seizure activity within his first two months of life, and his medical needs quickly became quite complex. Despite endless testing, a diagnosis remained elusive, and at the age of 8, Gabriel passed away. These experiences fueled Veronica’s passion to advance medical research and shaped her desire to support other families facing similar challenges. She hopes to apply her scientific knowledge and her understanding of the caregiver experience to support the Dravet community by facilitating Dravet-focused research and acting as a liaison between researchers, professionals, and families. Veronica currently lives in Tennessee. She enjoys spending time with her partner Scott and their pets and being outdoors in her free time.
Diane Martin-Rudnick: Diane Martin Rudnick was born in London and grew up in Tampa, FL. She earned her degree in Mass Communications at the University of South Florida, and has lived on the West Coast since 1987. Her adult children, Sierra, 27 and Kai, almost 24, both have the the SCN1a variant, paternally inherited, and Kai is on the Dravet end of the spectrum. Diane is passionate about a cure in her children’s lifetime. She seeks to honor her mother Barbara, a research chemist, by supporting families in this journey.
Mary Anne Meskis: Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition to her role at DSF she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council, as well as several other advisory panels. She has owned and managed several small businesses with an emphasis on project management in the private sector for over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational development and staff management and has continued to expand programming and fund development for DSF. Mary Anne resides in North Carolina with her husband and the youngest of her three children, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.
Barbara Swoyer: Barbara is a volunteer, advocate, blogger and written contributor in the community of families caring for children with special needs and medical complexity. She and her husband are the parents of two adult children, the youngest of whom has a diagnosis of Dravet syndrome and Secondary Mitochondrial Dysfunction. Barbara is active with the Dravet Syndrome Foundation as a member of the Caregivers of Adults with Dravet Syndrome Advisory Group. She also has a particular interest in palliative care and health care transition issues, and is active as a parent advisory board member and frequent contributor for the Courageous Parents Network.