As we look back on 15 years of Dravet Syndrome Foundation (DSF), we are profoundly grateful for the collective effort of our supporters, families, and partners. Your generosity has fueled groundbreaking progress and provided vital resources for families facing the challenges of Dravet syndrome.
Our 2024 annual campaign is a testament to what we can achieve together. Let’s reflect on the strides made possible by you.
A Year of Milestones
Supporting Families in Times of Need
Over $11,000 in Patient Assistance Grants and Disaster Relief Grants have reached families in critical moments. This assistance ensures that no family walks alone during their hardest times.
“We are so grateful for our Sami seizure monitor. We use it every night, all night long to help alert us to seizures. It has done it’s job this far and has allowed us as parents to get some sleep!” –Janelle Barnao, 2024 Patient Assistance Grant Recipient
“Our Dravet Warrior Matthew was limited to the community and outside events and with the help and blessing of the Dravet Foundation he is now functionally experiencing community outside events. Matthew received a Larktale Stroller and a cooling vest to help control his seizures activity and allow him to enjoy the outdoors unlimited!” -Yvette Luna, 2024 Patient Assistance Grant Recipient
We also provided $11,000 in Conference Scholarships, enabling families to attend our 6th Biennial DSF Family & Professional Conference. This vital event connects families and professionals, fostering a community of support and collaboration.
Welcoming New Diagnoses
Newly Diagnosed Family Kits reached 135 families this year, offering hope and resources when they needed them most.
Empowering Community Connection
This year, we trained 15 Family Network Ambassadors and launched new support resources, including a Caregiver Connect webinar series and a virtual meetup specifically for grandparents and extended family. These initiatives help ensure that every family member has a place to listen, learn, and ask questions.
Advancing Research and Knowledge
Fueling Innovation
Thanks to your generosity, DSF awarded $2.475 million across eight research grants, bringing our total funding since inception to over $9.1 million. Notably, we directed $1 million to The Children’s Hospital of Philadelphia for the Dravet Genome Project. This groundbreaking initiative compiles comprehensive genetic and clinical data, laying the foundation for better understanding and treatment of Dravet syndrome.
“My brother Sadarth has typical Dravet syndrome, even though we have the same mutation… His seizures have always been more frequent and difficult to treat and started much earlier. And I’m actually here to help my team recruit for the Dravet Genome Project, and we hope that we can understand why this is the case. So this is my personal journey with SCN1A and beyond.” -Arjun Palle, Researcher, The Children’s Hospital of Philadelphia
“This transformative grant from the Dravet Syndrome Foundation will support generation of an invaluable resource of clinical and genetic data to be made available to the research community to accelerate advances in the field of Dravet syndrome for patients and their families.” -Dr. Ethan M. Goldberg, Director, The Epilepsy Neurogenetics Initiative (ENGIN), The Children’s Hospital of Philadelphia
Collaboration for Progress
This December marks our 15th Annual Research Roundtable, where leading researchers, clinicians, and advocates come together to strategize on addressing the most pressing challenges in the field.
Uniting for a Cause
Raising Awareness and Funds
Our five fundraising galas generated over $1.37 million, while our 12 Steps Towards a Cure walks in 2024 raised over $230,000, a remarkable 92% increase compared to the five walks in 2023. This growth reflects the incredible dedication of our community, whose passion and commitment have expanded the reach and impact of these events.
“Thank you SO much for being there for us every step of the way as we get ready for our first fundraiser… We have dreamed about it for years and finally decided that this was our year. Misty has been so encouraging to me throughout this process and so patient with all of my questions as a first time fundraiser. If you’re thinking about it, do it! It’s fun and fulfilling and a great way to put our love for our warriors into action!” -Reagan King Hill, Event Host, Steps Toward a Cure: Scranton, PA
In addition, our supporters organized eight community-led peer-to-peer events in 2024, raising over $620,000—an impressive 90% increase from the $326,000 raised by two events in 2023. These events exemplify the power of grassroots efforts and the generosity of individuals like you coming together to make a difference. We are deeply inspired by and grateful for the creativity, energy, and compassion of our community in helping us move closer to life-changing breakthroughs for Dravet families.
“I just want to say thank you to DSF…I wish I didn’t have to do this, but I do it, and you guys make it easy. And I would just encourage any family who doesn’t know what they can do to help, every little thing helps, and if all of us do it together, it’s even that much better, and some day we will have a cure. Thank you.” -Heather Johnson, Ciara’s Spirit of Hope awardee, P2P Fundraiser: A Cake 4 a Cure
Expanding Our Reach
DSF’s executive staff represented the foundation at over 20 professional events this year, forging connections to further our mission. In addition, we proudly participated in Rare Disease Day on the Hill, amplifying the voices of Dravet families to influence policy and awareness.
Building on this momentum, we recently launched a new Legislative Advocacy Program aimed at empowering our community to engage directly with lawmakers. Through this initiative, we are equipping families with the tools and resources needed to advocate for policies that improve the lives of those affected by Dravet syndrome. This program underscores our commitment to ensuring that the challenges faced by our community are heard and addressed at the highest levels.
The Work Ahead
While we celebrate these achievements, there is still so much to do. The challenges faced by Dravet families remain complex, and we are committed to meeting their needs head-on. Looking ahead, we anticipate directing at least $1.5 million in additional research funding by the end of 2024, driving forward critical discoveries and innovative solutions.
Your continued support will be the key to reaching new milestones. Together, we can make 2025 a year of even greater impact, providing hope and tangible progress for families everywhere.
We invite you to stay connected, share your story, and join us in this mission to #cureDravet. Let’s make a difference that matters—for every Dravet family, now and in the future.
To support our 2024 Annual Campaign, visit www.dsfannualcampaign.org.
Thank you for being a vital part of this journey.
