Back in January, Tatiana Lopez joined our staff as our Diversity, Equity, and Inclusion (DEI) Coordinator. We saw a need to improve how inclusive our organization is, and we wanted to re-invest in our mission by adding someone to the team who is dedicated to helping us make sure ALL families feel part of our community and have access to much needed resources and support.
Together, it is our goal to ensure that we are raising awareness and supporting families living with Dravet syndrome, no matter their location, socioeconomic status, cultural differences, social or ethnic backgrounds, etc. Tatiana is helping us with new initiatives such as outreach opportunities, more community support groups, additional Spanish-speaking resources, and more to help make this possible.
Tatiana recently did a three-part blog series on DEI, which you can read here.
Dravet Syndrome Foundation
Reminder: Patient Assistance Grant Applications Are Open
Applications for our Patient Assistance Grant Program are still open! This program offers grants to patients with Dravet syndrome and related SCN1A epilepsies for necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs.
The program is open until Dec. 1, or until funds run out. Applications are reviewed on a first-come, first-served basis, so be sure to apply soon to secure your opportunity. This program is open to all patients worldwide who are members of the DSF Family Network. Learn more and apply for the grant here.
Day of Dravet
Our Day of Dravet Workshops are almost here! This is a time for patients and their families to come together to learn about research and treatment, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. Workshops will be held in various locations across the United States. See which workshop is closest to you here.
Homes For A Cure
In honor of their 125th anniversary, McKelvey Homes is hosting a special fundraiser for the Dravet Syndrome Foundation!
Now through Sept. 30, McKelvey Homes, located near St. Louis, MO, is donating $1,898 to DSF for every home that is sold! We are thankful for their support and their help in funding a cure. Learn more about McKelvey Homes and this special fundraiser here.
The ARGUS trial is now enrolling patients with Dravet syndrome who are 2 years or older.
The study aims to determine if EPX-100 (Clemizole HCl) can decrease convulsive seizures and will also evaluate other changes in seizures, sleep, and quality of life.
Learn more about the trial here.
News and Events
- Steps Toward A Cure: Desloge - Those near Desloge, Missouri are invited to join us and take steps toward a cure!
- Steps Toward A Cure: Raleigh - Join us in North Carolina as we walk/run for a cure together! Learn more.
- Double Down for Dravet - Let's have fun and fundraise together in Frisco, TX on August 12! Learn more.
- Dance Away Dravet - Help us Dance Away Dravet in Jamison, PA on September 16. Learn more.
- Dance For Dravet - Join us on October 6 in St. Louis, MO as we dance and fundraise for a cure. Learn more.
- Research Grant Applications - We are now accepting research grant applications for 2023, including a special one-time call for applications focused on genetic impacts on patient phenotype with budgets up to $1M. Learn more about the qualifications and opportunities here.
- Clinical Trials - Learn about upcoming clinical trials and see if any may be right for you and your family.