Receiving a diagnosis of Dravet syndrome is devastating. All the dreams and hopes you have for your child and family are suddenly turned upside down, leaving you with uncertainty and fear of the unknown. Once things begin to settle after diagnosis, we frequently hear from parents that they feel that they are often the expert in the room when it comes to explaining this disease and the complex needs of their child to healthcare providers. Unfortunately, since Dravet syndrome is a rare disease it is not uncommon for a parent’s experience and knowledge to surpass the limited clinical experience with this disease that some healthcare professionals may have. Finding specialists who know and understand the disease may be difficult, and there may also be geographic or insurance barriers that prevent you from seeing a specialist out of state. Families with adult patients report it can be even more difficult to find adult healthcare providers who understand Dravet syndrome and are familiar with recently approved treatments and best care practices.
DSF saw the need to offer resources for all healthcare providers to help them better understand this disease and offer timely and helpful information for the clinical care of patients. In collaboration with the American Epilepsy Society, DSF has developed a free on-demand continuing medical education (CME) program for professionals. This CME-accredited webinar series features seven experts from DSF’s Medical Advisory Board who provide guidance and share current treatment approaches with medical professionals who care for patients with Dravet syndrome. Topics span diagnostic considerations, adult presentation and transition of care, telemedicine, new FDA-approved medications, and seizure rescue action plans. Individual webinars consist of a 30-minute presentation followed by a Q&A.
You are an integral part of your child’s healthcare team and our community. Help DSF assure that the healthcare professionals who treat our patient community have the information they need by sharing on our Listen+Learn webinar series. You can either share the link on our website or print this flyer to share with providers for more information and how to register. These webinars are also available for parents who are seeking more information on topics that will help them on this medical journey.
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, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council.
She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF.
Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.