September 14 , 2022

Dear Friends,

Autumn is here! The new season brings many updates, events, and ways you can get involved with the Dravet Syndrome Foundation. Cooler temperatures make fall the perfect time to get outside and get active. Help us raise awareness and funds for Dravet syndrome support and research by joining our Steps for a CureDash for DravetRace for Research, or Cycle for a Cure.

We also have many exciting upcoming fundraisers such as Double Down for Dravet and Dance for DravetCan't make it to any of our upcoming events? No worries! You can also host your own event.

The new season is also a great time to consider joining our DSF Volunteer Network. The DSF Volunteer Network is an easy way to get connected with a variety of opportunities within DSF and the Dravet syndrome community. Learn more and join the network here.

However you choose to get involved this season, we're grateful and look forward to an exciting season together!

Warmly,

Dravet Syndrome Foundation

 

2022 Day of Dravet Virtual Workshop

You're invited to join us for the 2022 Day of Dravet virtual workshops on Saturday, September 24th from 12-5 ET, followed by Caregiver Lounges from 6-7 ET.

Day of Dravet workshops are a time for patients and their families to come together to learn about research and treatment options, connect with other Dravet syndrome families, and be part of DSF’s shared vision for a better outcome for those affected by Dravet syndrome. You can also request fun activity kits for patients and siblings in the U.S., thanks to support from Jazz Pharmaceuticals. Plus, there will be two breakout sessions for kids during Day of Dravet.

Learn more on a variety of topics, and get accurate information to help you make confident and appropriate decisions regarding your loved one’s care. Sessions are presented by community experts – including other parents.

See this year's speakers and sessions, and register for the event here.

 

PAG Application

The DSF Patient Assistance Grant Program offers funding to patients with Dravet syndrome and related epilepsies for necessary medical equipment, therapy devices, and educational aids associated with these conditions. Applications close on December 1st. Learn more.

Walk for a Cure

Can't make it to one of our in-person walks? Join our virtual Steps Toward a Cure on September 18-25. Everyone can participate in this virtual 1-mile walk, stroll, or run across the United States. Register and create your team to honor your Dravet Warrior. Learn more.

Leave Your Mark

During the 2022 DSF conference, participants were asked to “leave their mark” on two canvases in the foyer of the speaker hall. Through brushstrokes, they left their hopes, reality, and contribution to curing Dravet. One of these paintings is available in a limited edition. Learn more.

 
 

News and Events

  • Race for Research - Join DSF’s Race for Research program. Help spread awareness and raise funds to support those affected by Dravet syndrome! Upcoming Race for Research event:

  • Steps Toward a Cure - Steps Toward a Cure is going virtual! If you've been wanting to participate, but have not had an event in your area, now is your chance to get your steps in with us from wherever you are. Join us virtually September 18 - 25, 2022, or see our upcoming in-person events below:
  • DSF Casino Night - Our Casino Night fundraiser includes casino games, dinner, sponsorships, live and silent auctions, and more. It is a great excuse for adults to have a fun night out while supporting a cause they care about! Find an upcoming Casino Night in your area, or we'd love for you to host your own! Upcoming Casino Night event:

  • Dance for Dravet - Dance for Dravet is an annual fundraising event organized by the Brennan and Odlaug families to raise funds for the Dravet Syndrome Foundation. This year's event will take place on October 14, 2022 at Third Degree Glass Factory in St. Louis, Missouri.

 
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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