This week, I wanted to share an update on an exciting new project we are working on and to introduce you to the great partners we are working with to development this useful tool for our community.

Earlier this year we were excited to receive an unrestricted grant from Greenwich Biosciences to start the DSF Caregiver Connect Program, as an extension of our DSF Family Network. This multifaceted program is focused on filling the gap of managing the caregiver burden that accompanies caring for a child with ongoing complex medical needs.  

Many of you may already be familiar with some of the programs in the DSF Caregiver Connect Program, such as our Birthday Buddies Club and Caregiver Connect Grants, but the program we are really excited about is our Caregiver Burden Videos. When completed, this program will offer on-demand access to a series of videos and workbooks that will offer support for caregivers. In addition, DSF will be hosting live virtual support meetings where caregivers can sign up to watch the videos (as their schedule permits), then participate in the meetings to ask questions, learn coping mechanisms, and connect with others coping with caregiver burden and stress within the Dravet community. We will also be offering the videos and workbooks at no cost to other rare epilepsy communities to utilize with their caregiver populations.

Content development for the series is well underway and we will soon be recruiting families to participate and share their experiences. Filming for the videos will begin in January 2020 in New York and the content development has been led by experts from the Center for Pediatric Traumatic Stress (CPTS), along with our staff members who understand first-hand the caregiver burden and stress that our caregivers face daily. 

CPTS was founded in 2002 to address medical trauma in the lives of children and families, and is located at two of the premier children’s hospitals in the country: The Children’s Hospital of Philadelphia and Nemours A.I. du Pont Hospital for Children. They study the effects of medical traumatic stress on children, adolescents, and families, and use their findings to raise awareness and improve treatment. They also develop and disseminate resources about coping with traumatic stress to ill and injured children and their families. I was honored to be invited to join the CPTS Family Advisory Committee earlier this year to share the patient and caregiver perspective.

In collaboration with the National Child Traumatic Stress Network (NCTSN), CPTS has developed a number of resources for medical and mental health providers to use in preventing and treating medical traumatic stress, including the Pediatric Medical Traumatic Stress Toolkit for Health Care Providers, which includes practical tools, information, brief screening and intervention guidelines and patient handouts. For families, they have developed the Healthcare Toolbox to help families and children cope with illness and injury and they are currently in development of eSCIPP (Electronic Surviving Cancer Competently Intervention Program), a psychosocial ehealth intervention for parents of children with cancer.

We plan to launch our Caregiver Burden Videos before our 2020 conference in June, so stay connected to DSF for updates! If you have any questions or are interested in potentially participating in filming for our video series, please email me.