December 14 , 2022

Dear Friends,

Each year, we reflect on our mission statement and the steps we've taken to improve the lives of Dravet Syndrome families. What did we accomplish in these last 365 days?

Together, we funded research — from a postdoctoral fellow investigating genetic therapy preventing seizures to a groundbreaking study on gait and movement issues in adult patients. 

We hosted our 5th biennial conference, bringing together over 300 family members, researchers, clinicians, and industry partners to hear the latest on research and clinical care for Dravet syndrome.

We worked on a specialized segment of The Balancing Act on Lifetime, following a Dravet family from diagnosis into their treatment journey, bringing national attention to our rare disease.

We improved our website, making it more inclusive — with A.D.A. accessibility and website translation capabilities — so more people could access our resources. We updated the physician and comprehensive care center directories to connect families to vital services. We streamlined new caregiver resources, an educational video library, and an informative news page to make it easier for individuals to find what they need.

But our most important work as a community occurs at the individual level. When a family receives a new diagnosis of Dravet syndrome and lands on our site, we all figuratively take their hand. We help them make sense of the Dravet syndrome landscape and connect them to families who are currently walking this path so they can exchange information and ideas.

Take a moment to reflect, too. Thank you for your ongoing support this year. We could not do this vital work without our community.


Dravet Syndrome Foundation


2022 DSF Annual Campaign

Look at the list of moments captured in our opening letter. All of those accomplishments were due to your support. Please include DSF in your end-of-year giving plans by donating today

Now, through the end of the year, your contribution will make twice the impact because our DSF Board of Directors pledged to match any donation (up to $25,000). Donate through our easy online form.

Finding a cure for Dravet syndrome is on our daily agenda. Will you join us in funding research in 2023?


Grant Awards

We announced at our annual Research Roundtable that we are funding an additional five research grants this year, totaling $705,000, bringing our total research funding to nearly $6.4 million. Learn more about the grant awardees here.

Nonprofit Award

Dravet Syndrome Foundation won a 2022 Top-Rated Award from Great Nonprofits. Thank you to everyone who voted for us to help us achieve this win. Read inspiring stories about the DSF community and add your own here. (#GreatNP2022)

Shop and Save

We're partnering with Minted, and you can support us all year round by ordering cards using our FUNDRAISEDRAVET promo code. You'll get 20% OFF your order, and DSF will receive 15% of every purchase made using our code. Learn more.


News and Events

  • Congratulations - A special shout out to our top fundraising team in this year's Dash for Dravet - Battle for Blayke. Led by Kirsten Gloeckner from Lake Oswego, OR, they raised $15,252.89 for DSF!
  • 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.
  • Get Your Dravet Swag - Looking for the perfect gift? Consider purchasing some of our new Dravet merchandise. We have everything from tumblers, stickers, t-shirts, and more. Shop now.
  • Unite Us - DSF has entered into a partnership with Unite Us, which connects families with vital services, such as peer support. The organization bridges the gap, ensuring families have what they need to move forward, including meeting needs, such as food, clothing, and transportation assistance. 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 |

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