July 13 , 2022

Dear Friends,

Jennifer Lynn said it best on our Facebook wall: "I was just overwhelmed by how much I realized I was missing by not having been around Dravet families in person." We agree, Jennifer. It is a powerful experience to enter a room and realize you are surrounded by people who "get" it. We are thrilled that after years apart due to the pandemic, we could come together in Texas for the 2022 DSF Family & Professional Conference.

And it wasn't just parents and professionals who had a good time. Super siblings cried leaving sibling camp because they didn't want it to be over. Kids of all ages — from toddlers to adults with Dravet syndrome — loved meeting other people, and their parents enjoyed connecting with other parents in the activity room.

Our hearts were full every time we heard feedback about the helpful sessions, including the one about transitioning your child to adult care. Or how much people liked the care binders.

Thank you for attending if you were able to make it to Texas, and if not, we have plenty of ways to connect online and offline with others in the Dravet syndrome community. Recorded sessions are now available for on-demand viewing on our website at this link.

Warmly,

Dravet Syndrome Foundation

 

DSF Patient Assistance Grants

When you need a little extra support, DSF is here to help. The DSF Patient Assistance Grant Program offers grants to patients with Dravet syndrome and related epilepsies. This financial assistance can help provide necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs. This program is open to all patients worldwide who are members of the DSF Family Network. 

 

Care Transitions 

Hear Barbara Swoyer share her family's journey and learn about the struggles many face with transitioning care for adults with Dravet syndrome, plus insight on how to overcome these barriers. Learn more.

Stepping It Up

Ready to take the next step? It's simple to host your own Steps Toward a Cure event! Raise awareness and spark donations while encouraging your friends, family, and community to get on the move. Learn more.

Lend a Hand

Interested in getting involved in DSF, but not sure where to start? Join the DSF Volunteer Network! It's an easy way to get connected to a wide variety of opportunities within DSF and the Dravet community. Learn more.

 
 

News and Events

  • VIP Sibling Kit - It can be hard for brothers and sisters when a sibling has a chronic illness like Dravet syndrome. That's why we offer a VIP Sibling Kit for your sibling superstars! The purpose of the kit is to remind siblings how important they are, plus offer tools that can help them communicate, stay calm, and let those around them know how they’re feeling. 

  • Birthday Buddies - Register your loved one with Dravet syndrome to our Birthday Buddies program, and they'll receive a birthday card plus a small gift from DSF’s mascot, Aurora, the week of their birthday! At this time, Birthday Buddies is available to Dravet syndrome patients in the US.

 
DSF moderates private support groups for parents and caregivers of loved ones with Dravet syndrome.
These are great resources for families to ask questions and find support. 
Learn more

DSF is proud to be a GuideStar Platinum Nonprofit Profile participant.
Platinum lets us show quantitative metrics on the progress we’re making toward our mission!
Learn more

 

Dravet Syndrome Foundation
PO Box 3026  | Cherry Hill, New Jersey 08034
203-392-1955 | info@dravetfoundation.org

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