Dear Friends, Community. Research. Progress. These three simple words are at the heart of everything we do at the Dravet Syndrome Foundation, which is why they're the new tagline you see on our website and emails. It's no coincidence that the tagline leads with community. Both research and progress are possible due to people like you. We rely on each other to spread awareness, raise funds, and ultimately find a cure for Dravet syndrome. In fact, one of our major fundraisers is happening right now. We're currently 71% of the way to March's new $15,000 goal for #GiveUpYourCup. (We raised it because you already helped us reach our original goal — thank you.) Instead of getting your usual afternoon mocha, give up your cup of coffee and donate the funds to Dravet syndrome research. Each skipped sip takes us one step closer to the cure. Try saying that ten times fast. These fundraisers bring us better research and progress, which is why we ask you to turn to your individual communities and get them involved. If your child's classmates or clubmates (we're looking at you, Girl Scouts) or your neighbors, friends, family, or coworkers have been commenting that they wish they could do something, send them to #GiveUpYourCup. Ask them to get others to give up their cup, too, and donate the money to Dravet syndrome research. If they don't want to host their own fundraiser, they can always post your fundraising page in their social media feeds or email networks. It's a simple way they can make a difference. Let's expand the community like a ripple in a pond until we reach the stable shore. Thank you, Dravet Syndrome Foundation | |
Check Out Our Super Siblings Club | |
It can be challenging when a brother or sister has a chronic illness. Dravet syndrome impacts the family, sometimes disrupting routines and often creating worries that weigh on a child's mind. We've created resources specifically for our Dravet syndrome siblings to help families navigate Dravet syndrome together. Our Super Siblings VIP Kits have tools for children of all ages, such as a journal, a coloring book, and more. These tools help children better understand and express their feelings as well as connect with others. If you already have your kit, read our Sibling Voices survey or learn more about upcoming events for siblings. | |
 | PAG Giveaway Our 2023 Patient Assistance Grant is now open. PAG covers necessary medical equipment, therapy devices, and educational aids associated with Dravet syndrome and related epilepsies not covered by private insurance or other assistance programs. We are also hosting a Facebook giveaway for a SAMi monitor, a cooling vest, or an iPad. To enter, like the linked post and leave a comment letting us know what you love about the PAG program. Learn more here. | | |  | Clinical Trials Get involved with research. Longboard Pharmaceuticals, Inc. is testing the investigational drug LP352 for patients with Developmental and Epileptic Encephalopathy (DEE), including Dravet syndrome. LP352 is a serotonin-modulating drug (called a 5-HT2C superagonist). The study is currently accepting patients ages 12 to 65. If you want to learn more about this clinical research study and see if you qualify to participate, check out the study fact sheet here. | | |  | New Webinar Let's talk about research. We are hosting a "Clinical Trial Experience and the Importance of Patient Participation" webinar on Monday, March 13, 2023, at 4 pm PT. Families and caregivers are encouraged to join us as we discuss the importance of clinical trials and how you can get involved in current research. You must RSVP to receive the Zoom link. We want to give special thanks to our event sponsors — Biocodex, Jazz Pharmaceuticals, Takeda, and UCB. Learn more. | | | | | |
News and Events - Host an Event - Hosting a fundraising event is a great way to unite your community and raise awareness for Dravet syndrome. Learn more about how to bring an event to your area here.
- Heart to Heart - DSF hosts virtual monthly online sessions to allow caregivers to connect and engage with peers, support one another, and ask us questions. Sign up for the next session.
- Recent DSF Accomplishments - Our foundation has directed over $6.7 million to research. See what that has helped us to achieve here.
- Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
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