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Dear Friends, We live in a neurotypical world, where parenting advice for behavior is often designed for neurotypical parents to guide neurotypical children. But our community knows that behavior can be one of the most challenging day-to-day aspects of parenting a child with Dravet syndrome. Last year, Eileen Devine, LCSW, recorded her "Brain First" training to give our community concrete tips you can implement today, both in framing your own parenting ups and downs and helping your child find calm through self-control and resilience. If that future feels impossible, you need to carve out time in your schedule to watch these videos. We broke up the sessions into three-hour videos, but you can watch them at your own pace, find stopping points, and pick them back up again when you need another dose of helpful advice. We may be selfish in helping you find your parenting mojo. In March, we're asking you again to "give up your cup" and donate the money you would have spent getting your daily coffee fix to fund Dravet syndrome research. We know, we know — challenging behavior - caffeine = disaster. Unless you come from a Brain First approach. Then, it's a win-win: Your donation goes to Dravet syndrome research, getting us closer to a cure, and you learn valuable tips to curb challenging behavior. By the way, if you can't wait to "give up your cup," or you want to make an immediate donation so you can keep caffeinated in March while still supporting Dravet syndrome research, click over and check out our landing page. More information will be coming soon about how to "give up your cup," encourage others to support research, and have our community come together for one coffee-free month. Thank you, Dravet Syndrome Foundation | |
Patient Assistance Grant Program Opening Soon | |
We know that families impacted by Dravet syndrome and related epilepsies may struggle to access the care and resources they need. There are many items, including necessary medical equipment, therapy devices, and educational aids associated with these conditions, that private insurance or other assistance programs do not cover. That is why we developed the DSF Patient Assistance Grant Program, which helps families bridge the insurance-coverage gap to access the critical resources they need. The 2023 program opens on March 1, and we encourage you to apply if you need this benefit. The program is open to all patients worldwide who are members of the DSF Family Network. | |
 | Share Your Story When her family first began noticing tremors in her arms, Berkley was four months old. At around six months old, she had her first full-body seizure. At eight months old, her DNA results came back with the SCN1A mutation. When asked what advice her family had for other Dravet families, they said, "Be a strong advocate for your loved one." Learn more about Berkley's story and how you can be an advocate by sharing your story here. | | |  | Upcoming Plans Last month, our team traveled to Austin, Texas, for our DSF Annual Meeting to talk about how we can further support you in 2023. We discussed several initiatives we are working on this year to make a difference, such as a multi-pronged research initiative centered on research readiness and several new resources to help our patient families navigate living with Dravet syndrome. Learn more about our upcoming plans here. | | |  | Clinical Trials The Stellina Study is a Phase 1/2a clinical study evaluating a single dose of diazepam nasal spray (VALTOCO®) as a rescue medication in children aged 2-5 who have been diagnosed with epilepsy. The study's objectives are to assess the pharmacokinetics (PK) of diazepam after one intranasal dose of VALTOCO and assess the long-term safety and tolerability in the six-month open-label safety period. Learn more. | | | | | |
News and Events - Important Information about Medicaid - Medicaid eligibility renewals paused during the COVID-19 pandemic, but they are restarting soon. If this is relevant to you, learn more here to ensure that you stay covered.
- 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.
- Join Our Family Network - The DSF Family Network is open to any parent/legal guardian or sibling interested in accessing our advocacy services and programs. Sign up here to be a part of this family community and to stay up-to-date on new advocacy resources, clinical trials, and educational and fundraising events.
- Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.
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