The 5th annual Dance for Dravet will take place on Friday, October 6th at Third Degree Glass Factory in St Louis, Missouri. Started in 2019 by the Brennan and Odlaug families, the event was designed to raise awareness of Dravet syndrome and raise funds for DSF, in honor of family member Anna Odlaug who is 6 years old. Their first four events raised over $1.2M, including the 2022 event which was their record year, raising over $468,000. For 2023, they are hoping to raise $500,000!! These funds are critical for helping to drive the mission of DSF forward.
The event will be emceed by Tom Ackerman the Sports Director at KMOX radio in St. Louis, dinner will be served by Chef Tim Brennan of Cravings Gourmet, and the J-Rob Quartet will provide live music throughout the evening. Sponsors to date include Title Sponsor, McKelvey Homes, the Odlaug and Brennan Families, Jack and Lois Easterling and Greenleaf Gallery as Platinum sponsors and many others. In addition to a live program, there will be a live and a silent auction. For those unable to attend, you can still bid on auction items from the comfort of your own home. Click on this link for information on how to register and view this year’s amazing auction items.
The event co-chairs are Jim Brennan of McKelvey Homes and Ted Odlaug, PhD, DSF Board President. Ted recently shared why this event is so important to him:
Today I feel like Dravet syndrome (DS) is winning and we are losing. My granddaughter, Anna, is currently back in the hospital after a previous day and night of multiple seizures. Seizure control this year has been elusive as she enters her 6th year of life with DS.
In the last 5 years, the good news is that three medications have been approved for DS, and there are several other medications that can be prescribed for treating patients with DS. The ketogenic diet is often prescribed and there is the option for a vagus nerve stimulator (VNS) implant. However, finding the right combination that will give good seizure control with minimal drug side effects is a trial and error process. Anna is a poster child for the holes in the current process.
My colleagues at DSF know that I am frustrated with the current state of treatments for patients with DS. We need new algorithms that will give doctors more accurate ways to predict which treatments are more likely to work for a patient with DS (i.e., precision medicine). Precision medicine considers the individual patient’s genetic profile and other factors. The underlying biology of DS is very complex. Our goal at DSF is to partner and foster the collaboration between the pharma and biotech industry and researchers in academia to unravel the complex biology of DS that will lead to better treatments and one day a cure.
So, while at the moment I may feel defeated, what gives me hope is that by continuing to increase awareness and fund research there will be better days ahead for Anna and others with Dravet syndrome. Your donations to DSF are critical to our mission. Thank you for your continued support for helping Anna and others living with Dravet syndrome.
While this event is in honor of dear Anna, it is truly a benefit in honor of all of those who suffer with Dravet syndrome.If you are interested in joining us for a night of fun and fundraising, there are still sponsorship opportunities and tickets available at www.dancefordravet.org. Your generosity will help the DSF continue to fund vital research and support patients and their families.
You can read an update on Anna from her family at this link.