February 8 , 2023

Dear Friends,

We know how much you enjoy our events. They're a chance for the community to come together and enjoy a fun activity, all in the name of raising money that goes toward Dravet syndrome research or family support services. In other words, everyone gets a lucky strike at our bowling event because even if you don't knock down all of the pins, you know that you've moved the whole community one step closer to a cure.

We have two fun activities coming up in May, which despite the snow on the ground, is not that far away. You can learn more about Strike Out Dravet (Boston, MA) and Raising Hope Boise (Boise, ID) — and other upcoming opportunities online or in your area — on our events page.

We understand traveling for an in-person event may be difficult. Even if you live far away, you can do so many things from your home state. Sponsor an event or help a sponsoring business connect with DSF, donate an auction item, make a direct donation, or even better, bring the community together in your area and host your own event. We'll help you set it up.

We can't wait to see you at these fun spring events. 

Thank you,

Dravet Syndrome Foundation

 

Strike Out Dravet

There's no time to spare — help us strike out Dravet syndrome by joining us for an evening of fun at our upcoming Strike Out Dravet fundraiser on Thursday, May 11, at 6 p.m. at Kings Dining and Entertainment Seaport in Boston, MA. The evening will include dinner, drinks, bowling, and silent and live auctions.

Also, Raising Hope Boise takes place in May. This event will take place on Saturday, May 13, at 6:30 p.m. at the Penthouse at CW Moore Plaza in Boise, Idaho. This year's theme is "rock stars," and you're encouraged to dress as your favorite musician. Enjoy heavy hors d'oeuvres, drinks, and silent and live auctions at this great event.

 

New Clinical Trial

Sanguine Bio, a provider of at-home clinical research services, is running a research study sponsored by Stoke Therapeutics to identify potential biomarkers for Dravet syndrome. Participation in this study involves a one-time blood draw conducted in your home by one of Sanguine Bio’s mobile health staff members. Participants will receive $100 compensation for their time.

Heart to Heart

We are introducing a new once-a-month meet-up series, Heart to Heart. These one-hour sessions create a space for caregivers to connect and engage with peers, support one another, and ask questions of DSF and our staff. Sessions will occur on the last Monday of each month. We are not recording these sessions, so you must attend to connect. Learn more here.

Sponsors Needed

Do you own a business or work for a company that would benefit from national attention while supporting the DSF community? If so, inquire about our sponsor opportunities. Corporate donations to nonprofit organizations provide companies with a way to give back to the community, engage their employees, and improve brand perception.

 
 

News and Events

  • Do You Have a Seizure Action Plan? - It's Seizure Action Plan Awareness Week. Learn more about the importance of a seizure action plan and access valuable SAP resources here.
  • The End of Amazon Smile - Amazon is discontinuing its Amazon Smile program on February 20. Thank you to everyone who donated through this program in the past to support us. Get your last-minute shopping done while the program is still in place, or consider making a one-time donation to help us compensate for the loss of this valuable program.
  • Host an event - By hosting a private fundraising event to benefit DSF, you can raise funds for research while also increasing the public’s awareness of Dravet syndrome and related epilepsies. Learn more
 
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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