Resources for Patient Families from Dravet Syndrome Foundation

This content is courtesy of the Dravet Syndrome Foundation. To view the original post, click here.

As we roll into 2021, I wanted to remind our community of the many important resources that the Dravet Syndrome Foundation (DSF) offers to help patient families on this complex medical journey. We recognize that you deal with a lot each day and DSF is here to help. Brief overviews on each program can be found below or you can click on each program for full details.

DSF Family Network: We encourage patient families to register for the DSF Family Network to make sure you are counted and kept up to date for educational events, clinical trials, opportunities to share the patient experience, fundraisers and more.

Caregiver Support Groups: DSF moderates private support groups on Facebook for parents and caregivers of patients with Dravet syndrome (DS). These are a great resource for families from around the world to connect, ask questions, and find support. 

Day of Dravet Regional Workshops: DSF typically hosts 5 regional workshops across the U.S. each fall. Families can learn the latest in DS research and treatments, as well as connect with local DS families through regional break-out groups. In 2020, Day of Dravet was transformed into a single virtual event and plans for 2021 are still to be decided.

DSF Family & Professional Conference: Our biennial conferences are a unique opportunity to connect in person with other families and community stakeholders, as well as to learn about the latest in research and caregiving strategies. We plan to bring our stakeholders together again in person for our conference in 2022. In the meantime, we are putting together a virtual opportunity in June 2021 that will allow our patient community to continue to learn and grow together, from the safety of their own homes.

Educational Brochures: DSF offers a series of brochures in electronic and print formats, both in English and Spanish, for our patient community. These brochures are an excellent way for our patient families to share an overview of DS with teachers, healthcare providers, therapists, and others involved in the patient’s care.

Educational Webinars: Due to the postponement of our conference planned in 2020, we offered an educational webinars series to keep our community up to date on new treatments and resources. All sessions were recorded and are archived on our website. In addition, members of DSF participated in a series of educational videos produced by NeuroCareLive that addressed caregiver concerns.

DSF Patient Assistance Grants: The DSF Patient Assistance Grant Program offers grants to patients for necessary medical equipment – such as seizure monitors, adaptive strollers, or cooling vests; therapy aids – such as adaptive chairs, adaptive swings, or bath chairs; and educational devices – such as iPads, sensory tables, or educational software.

DSF Disaster Relief & Recover Fund: This fund was established for patients that have been impacted by natural and other significant natural disaster events in the U.S., such as tornados, hurricanes, earthquakes, or flooding that results from a significant natural disaster. Families may apply for a gift card that may be used for lodging, food, supplies, or however needed.

Birthday Buddies: Make sure to register your child or adult with DS and they will receive a card and a small gift from DSF’s mascot, Aurora, each year! This initiative is sponsored through an unrestricted grant from Greenwich Biosciences.

Super Siblings Club: Oftentimes siblings of a child with special needs can feel unimportant or neglected. Thanks to a continued collaboration with Zogenix, we are able to provide two important new resources to support siblings and their families in our community.

Find a Doctor and Comprehensive Care Centers: These online tools help families find medical professionals that understand the complexities of DS and the need for aggressive and comprehensive care.

We also have some new programs starting later this year, including a quarterly webinar for newly diagnosed families and our virtual conference in June. Make sure to join our email list and follow us on our social media channels – Facebook, Twitter, Instagram, YouTube & LinkedIn – to keep up to date with new programs and services that may be of interest for your family.