Thanksgiving is the perfect time to reflect on the year and what we are thankful for. While nobody’s life is perfect, those of us in the Dravet syndrome patient community definitely have our fair share of struggles and tough days. Sometimes it can be difficult to focus on the positive and have hope for the future. I have personally found that expressing gratitude can help me feel more connected to others and a connection to something larger than just myself.
This Thanksgiving, I wanted to express my gratitude for all that our patient community and stakeholders have done and continue to do to help move our cause forward through their volunteerism and collaborative work as a part of DSF. Positive changes have happened because of each of you.
DSF has connected and grown our community. Once they connect with us, our patient families know they are not alone. I have heard from many parents that finding DSF and getting involved was a turning point for them. It was a lifeline that gave them the resources and support they needed to help guide them through this medical journey. It is also an opportunity to work with others for the overall betterment of our community.
DSF has given our community a voice. Few things strengthen a community more than working together to reach a goal. As a rare disease you can be underserved and underrepresented when you fall between what the government and the private sector can provide. By having a nonprofit dedicated solely to Dravet syndrome, we have a vehicle that allows us to set the agenda and prioritize the research, treatments, and resources that our patient community needs most.
DSF has given our community a purpose. Receiving a diagnosis of Dravet syndrome is devastating. Having an organized and educated patient community allows an outlet for families to help raise funds for research, spread awareness, and support others. It offers a sense of empowerment in what can feel like an otherwise uncontrollable situation.
DSF has demonstrated the value of teamwork. The only way we can get to a point of better treatments is by the cumulative efforts of all of our community stakeholders. As a rare disease, we are fortunate to have three new medications approved by the FDA for use in Dravet syndrome since 2018, with several more clinical trials underway. That has happened because our patient families understand the importance of their participation to make change and have stepped up to do their part when the opportunity for clinical trials arose.
DSF has shown there is hope for change. I am humbled to know that we are the beneficiaries of those who have gone before us, and that we stand on the shoulders of those who worked hard for us to benefit from their efforts and discoveries. It all started with the physician whose name touches this community, Dr. Charlotte Dravet. With her discovery in 1978 came knowledge, awareness, and a path towards research and new treatments. Our community members\’ efforts, both large and small, have already made change and these efforts will continue to make a difference for future generations.
When my son was diagnosed 17 years ago, I googled “Dravet syndrome” and there were only three hits. DSF was built out of the frustration and desperation that we as parents felt. There wasn’t much known about this disorder and we wanted to start to affect change – and we have! I am grateful for the opportunity to be able to play a role in making positive change for our community, and I am sure you are, too. May those who come after us benefit from our efforts to bring awareness and broaden research for the Dravet syndrome community.