Earlier this year, Dravet Syndrome Foundation (DSF) was approached by Greenwich Biosciences, to discuss and find a meaningful way that they could give back to the Dravet syndrome community. Our discussion covered the many needs within our community, particularly the burden of our caregivers. As a result, DSF has developed a multi-year project known as Caregiver Connect, to serve our patients and caregivers. The program is fully sponsored through a generous grant from Greenwich Biosciences.

Caregiver Connect is a unique multi-faceted program focused on filling the gap of helping to manage the caregiver burden that accompanies caring for a child with ongoing complex medical needs. It offers an opportunity for caregivers and families to connect with others on the same caregiving journey, through a safe and private network. Caregiver Connect focuses on educational tools and connections for caregivers to help them manage and cope with the ongoing demands and stress that they face on a daily basis while caring for their loved one. 

Caregiver Connect has five programs, which will roll out in phases from now through the end of 2019. Our first two programs – DSF Birthday Buddies and Connect Grants – opened in June.

DSF Birthday Buddies is a birthday club for patients with Dravet syndrome who reside in the United States. Parents just need to sign up and the week of your child’s birthday they will receive a birthday card and small gift from DSF’s mascot, Aurora! 

Connect Grants are available from $100-$300 and can partially or fully fund a local Dravet family gathering or an ongoing Dravet support group in your area. For example, you can plan an event for families,  a monthly coffee meet-up for moms, or a dinner for dads. The goal of these grants is to allow our community members to connect and receive support from one another. At this time, Connect Grants are only available for events within the United States. 

Later this month, our staff and parent ambassadors will be participating in Peer-to-Peer Support Training to better serve and assist our community members. This training will provide our volunteers with the knowledge and experience to help guide our community members in advocating for their loved one, along with providing emotional and practical help to one another.

The highlight of the Caregiver Connect program is a video series that focuses on caregiver burden and stress. These enduring materials will provide ongoing support and will include a virtual support program twice a year, built around the videos and accompanying materials. Participants can watch the videos as their schedule allows, then sign up to participate in a live virtual support group to ask questions, learn coping mechanisms, and connect with others dealing with caregiver burden and stress within the Dravet syndrome community. The first of these videos will debut at the end of 2019.

Finally, our Dravet Dialogues, is a blend of online reading materials and a scheduled series of live virtual meetings with community experts focusing on caregiver support through discussion and Q&A sessions. Twice a year, a series of these presentations will be given in tandem with the caregiver burden video series. Additional sessions will be available on other topics that will help caregivers to manage their child’s health and special needs. The goal is to educate the Dravet caregiver population on best practices and management, as well as reaching the broader population on how to support the Dravet families in their lives.  

At DSF, we are always looking for new ways to assist our patient families with programs that will offer substantial impact. If you have any suggestions on new programs, or feedback on existing programs, please email me. Your input helps DSF to build a stronger community with the resources and support its members need most.