This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF:
- 15 years of funding groundbreaking research.Â
- 15 years of connecting and supporting families.
- 15 years of raising awareness of Dravet syndrome.
- 15 years of collaborative partnerships.Â
- 15 years of impact.
This week we are taking a deeper dive on the second bullet point: 15 years of connecting and supporting families.Â
Living with Dravet syndrome often leads to feelings of social isolation. Following diagnosis, many caregivers strive to safeguard their child’s health by avoiding seizure triggers. Simple activities like attending a playdate, which might provoke excessive excitement and potentially induce a seizure, suddenly become daunting. Similarly, opting out of family gatherings to mitigate the risk of catching an illness that could exacerbate seizures and lead to hospitalization becomes a precautionary measure. Over time, families coping with this condition frequently find themselves excluded from social events and struggle to sustain friendships. This challenge is not only due to the time constraints imposed by caregiving responsibilities but also the necessity to steer clear of triggers that could precipitate seizures.
This underscores the significance of patient families coming together to exchange insights and seek support. DSF facilitates this crucial connection by providing multiple support groups as part of the DSF Family Network to ensure that families have a platform to ask questions and share their experiences. In addition, we offer the DSF Family Ambassador Program. Made up of caregivers of Dravet syndrome patients, these volunteers act as signposts to help guide others to our organization who are looking for support, education, and awareness. They help facilitate communication within our community, between our community and DSF, and help to further the mission of our foundation. Â
DSF also provides an extensive array of resources aimed at educating others about Dravet syndrome and assisting patient families in navigating their daily lives and assuring the best quality of care for their loved one. Many of these resources have been built by caregivers, for caregivers.
Our community is here for any caregiver or patient family in need of help. If you have questions or would like to connect, please email our Family Network Coordinator, Austin Watson.
