I have been asked on a few occasions by other non-profit partners how Dravet Syndrome Foundation (DSF) has been able to accomplish so much in such a short time. To quote Sam Walton, We’re all working together; that’s the secret. The accomplishments of DSF are not because of single individual – it is through collaboration and partnerships that we have built from the start. This collective consciousness and sense of urgency stretches across our entire community, from patients and families to medical professionals and researchers.
As our community grew, we saw that education, patient advocacy, and support were either inadequate or non-existent. We recognized we could help drive change in other areas besides research. We took a close look at all of the stakeholders in our community – not just caregivers and families but also our medical partners and supporters – and identified gaps and needs. By doing so and focusing our energy on these gaps, our community was able to evolve at an accelerated pace. We were able to show we were so much more than just a loosely connected group of parents. DSF is an organized and professional partner who brings value in a multitude of ways to all of our stakeholders, thanks to our connected community and a unified patient voice.
Dravet syndrome (DS) is socially isolating, so our approach to support and advocacy was to facilitate communication, education and empowerment for our caregivers. Because of the complexities of DS, it is common for patients to see many specialists. These specialists may have diverse opinions in diagnosis and treatment, or may not be well-versed in DS. This makes it especially critical for patient families to have a trustworthy and reliable resource to help clarify uncertainties and to break down the complex information conveyed to them by medical professionals in a way that is explained in more understandable terms. DSF’s website is a rich source for information ranging from diagnosis and treatment to current research and clinical trials.
By establishing programs that allowed our community to connect, we were able to assure they were not only educated on the best options available for their loved ones, but also that as a community we were poised and ready should certain opportunities such as clinical trials become available. These programs allow our caregivers and families the opportunity to share experiences, resources, coping skills, and hope, while allowing DSF to continually assess the needs of the community. Our private online Parent & Caregiver support group seamlessly connects our community across time zones and continents, allowing families to ask questions and offer advice. The DSF Family Network connects families regionally, both virtually and at in-person workshops each year. And our biennial Conference allows a more in-depth learning opportunity for caregivers and professionals, while bringing them all together at one location. We offer multiple brochures, in both English and Spanish, as well as a checklist for newly diagnosed families. We also established our Patient Assistance Grant (PAG) program, after learning that certain durable medical goods and educational devices were not always covered under commercial insurance.
Our medical professionals and industry members certainly benefit from many of the same programs as our families and caregivers. When they have an opportunity to directly interact with our community members it is valuable in helping them understand the daily challenges of living with DS, particularly those aspects that are not yet well understood. But they also have unique needs. To compliment our Research Grant program we established the annual DSF Research Roundtable as an opportunity to bring together researchers, clinicians, and other professionals with a strong interest in DS and related epilepsies. This in-person meeting allows an opportunity to learn about the latest in research and to have an open dialogue on the best way to address the critical challenges of DS in a way that will allow the most promising breakthroughs at the fastest pace.
Our community has accomplished great things and made positive changes in a short time, thanks to your involvement. We value your thoughts and feedback on ways we can improve our efforts and make our community stronger. Feel free to reach out to me at any time with suggestions at maryanne@dravetfoundation.org.
All the best,
Mary Anne
