If you are reading this blog, you are most likely already familiar with the Dravet Syndrome Foundation (DSF) and some of the work we do. You probably have some connection to our community, perhaps as a parent/caregiver, clinician, researcher, industry partner, or other supporter. But, have you ever read our mission statement?
A mission statement is a brief description that defines the purpose of an organization. It is the reason that that organization exists, and it is used to guide the organization’s decisions, priorities and actions. The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
It is our adherence to our mission statement and the backing of our collective community that have created large strides in the field of Dravet syndrome in just over 10 years. All while assuring that throughout all that we do, the patient and caregiver voice and their priorities stay front and center. Some of our larger community achievements include:
- Funding Dravet-specific research grants, totaling over $4.6M.
- 10 Research Roundtables, where top scientists and clinicians gather annually to discuss Dravet syndrome and our path forward.
- Approval of 3 new FDA-approved medications with an indication for Dravet syndrome, with several other companies currently enrolling for clinical trials or starting trials in 2021. This includes two new approaches that have the potential to improve more than just seizure control.
As a rare disease community, these successes have only happened because we, as a united community, have pushed them forward. Our work and our successes are community-driven. There is no governmental entity or other advocacy organizations out there that are making the Dravet syndrome community’s needs a top priority or assuring new treatment options become available. It is up to us to act to assure that progress continues. Now, more than ever, we need all of our community members to join in and continue to do what they can to help move our mission forward and keep our momentum going.
So, what can you do?
- Donate, if you can. Small donations collectively make a big impact, regardless of the size of an individual gift. If you have ever donated at any level, you have made a difference.
- Fundraise for DSF. Consider setting up a Facebook Fundraiser or join our upcoming annual virtual Dash for Dravet in November. Not only will you raise funds, but you will also spread awareness.
- Join our email list and follow us on Facebook, Twitter, and Instagram. Share our newsletters and posts to educate others on the patient and family impact and the need for new treatments.
- If you are a patient family, make sure you are registered with the DSF Family Network. Be counted and receive important information and resources for patient families, including access to our private parent support groups.
- Register for educational events. This year, Day of Dravet is virtual and will be held on October 17th. It often falls to our caregivers to educate their healthcare team on new products and treatments. Make sure you know the latest.
- Participate in research. It is our proven track record of trial participation that makes our community a contender for companies to consider when they are attempting to bring a new treatment to market.
As a parent of a young adult with Dravet syndrome, I understand how overwhelming it can be just managing your child’s day to day care and navigating this difficult and often exhausting medical journey. But there is always some way that you can help. I implore you to support the mission of DSF in a way that works for you. No matter how large or how small the effort, it is empowering to feel that you are a part of the solution.