We are excited to be partnering with Cook Children’s Medical Center in Fort Worth, Texas, and Dr. Scott Perry on this educational and inspiring event which will take place from June 18-20, 2020. It is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, medical professionals, researchers, and professionals in the pharmaceutical industry. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals.
This is your chance to learn the latest in Dravet syndrome – you can select from concurrent sessions on Thursday, Friday, and Saturday to discover the newest breakthroughs and advancements, as well as tips for with living with Dravet syndrome. There is something for everyone. If your loved one is newly diagnosed and/or this is your first conference, the evening sessions on Thursday, June 18, will be particularly helpful and take place right before our Welcome Reception.
Sessions on Friday, June 19, offer Continuing Medical Education and Continuing Nursing Education credits, but are open to all attendees. Leading researchers, clinicians, and experts will be presenting and sharing their knowledge on Dravet syndrome, including sessions on:
- New treatments & scientific advancements
- Cardiac risks
- Behavior & cognition
- Sleep issues
- Seizure detection devices
- Status epilepticus treatment & management
- Predicting outcome
- Gene therapy
On Saturday, June 20, we will offer two tracks on topics that are important to families and can help with daily patient care and management. You can view the entire conference agenda at this link.
Since sessions are being recorded to share with families and professionals who are unable to attend in person, no Dravet patients (children or adults) or siblings under 18 are permitted in conference sessions. We will be offering our Super Siblings Camp as well as a Dravet Hospitality Room at our flagship hotel, the Renaissance Worthington. Our Super Sibling Camp is available for a small additional cost for siblings of a child with Dravet syndrome, whose parent(s) are registered to attend the conference. Children must be at least 4 years old and potty-trained to attend. Limited camp scholarships are available for families where the registration fees will cause a financial burden.
Our Dravet Hospitality Room is a complimentary activity room for patients with Dravet syndrome and their caregivers. No nursing staff or aides are available in the Dravet Hospitality Room, so patients must be accompanied at all times by their own caregiver. Sponsored by Ciara’s Light Foundation, the program and activities will once again be developed and overseen by Ciara’s mom, Lori O’Driscoll, one of the founding board members of DSF.
Evening social events will take place each night at our flagship hotel, which is located approximately 2 miles from the medical center when conference sessions will take place. We will offer a complimentary shuttle service between the hotel and hospital during the day.
Thanks to the generous support of our Title Supporter, Greenwich Biosciences, we will once again be offering a Family Scholarship Program to help assist families with travel and registration costs. Full details can be found at this link.
Full event details are available on the conference website at www.dsfconference.org. We will be hosting a Facebook Live session in coming weeks to offer an overview of the event and answer your questions. Make sure to like and follow our Facebook page for details.
Watch this blog for more details and updates on the conference and please make sure to share conference information with other interested parties. We hope to see you in Fort Worth!