September 29, 2018
Dravet Syndrome Foundation’s (DSF) Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome.
Our Northeast Region’s event takes place on Saturday, September 29 at Massachusetts General Hospital in Boston, MA. Sibling Camp is available for siblings 4 and older who are toilet-trained.
Pre-registration is required.
Registration opens August 3 and closes September 14.
Dravet patients are welcome to attend these sessions, but to be fair to all attendees we ask that you remove anyone who is disruptive from the meeting space. A separate space will be available with activities for Dravet patients and their caregivers to enjoy. Parents and caregivers are responsible for monitoring Dravet patients at all times.
Special Thanks to our Northeast Parent Ambassador
The intent of these workshops is to allow regional families to meet and connect, and due to limited the capacity at each event, we request that you only register for the event in your geographic region as designated in DSF’s Family Network. Our regional map may be found at www.dsffamilynetwork.org
Richard B. Simches Research Center, Third Floor
185 Cambridge Street
Boston, MA 02114
Parking at Mass General Hospital is available for a $14 self-park daily rate or $20 valet.
When parking at these lots, explain that you are seeing Drs. Thiele and Morgan to receive the patient rate.
Visit the MGH Parking website for more information here.
Nearby public parking garages are also available for daily rates ranging $36-48.
These parking lots do not offer a patient rate.
|Saturday, September 29, 2018||Presenter||Session Information|
|9:00-9:45||Registration & Breakfast|
|9:45-10:00||DSF Staff and Ambassadors||Welcome|
|10:00-10:30||Elizabeth Thiele, MD, PhD||Dravet 101 and Q&A|
|10:30-11:00||Amy K. Morgan, PhD||Dravet, Cognition and Executive Functioning|
Annapurna Poduri, MD, MPH
|11:30-12:00||Elizabeth Thiele, MD, PhD
Amy K. Morgan, PhD
Annapurna Poduri, MD, MPH
|Professional Q&A Panel|
|1:00-1:30||Michelle Welborn||Obtaining Newly FDA Approved Drugs for Dravet Syndrome|
|1:30-2:00||Beth Fox, Parent Ambassador
Wendy Fry, Family & Caregiver Engagement Director
|Dravet Syndrome Foundation: Then and Now|
|2:00-3:00||Mary Anne Meskis, Executive Director||Patient-Centered Outcomes Research Discussion|
|3:00-3:30||Identifying Community Needs|
|4:30-4:55||Laurie Bailey||Sibling Project Updates|
Subject to change
Room blocks have been secured at the following hotels for our families:
Wyndham Boston Beacon Hotel
5 Blossom St Boston, MA 02114
Adjacent to Simches Research Building (where meetings will be held)
$299/night for Friday, September 28 and Saturday, September 29
$51 daily parking rate
For reservations, please click HERE or call (877) 999-3223 and refer to the “Dravet Foundation Room Block and/or ID #: DRAVETFOUNDA”. For assistance with shoulder nights or if you require additional information, please call the hotel directly at (617) 742-7630.
All reservations must be in place no later than August 15, 2018
Holiday Inn Express and Suites, Boston – Cambridge
250 Monsignor O’Brien Highway, Cambridge, Massachusetts 02141
Complimentary shuttle to/from MGH (~15 minute ride)
$220/night for Friday, September 28 and Saturday, September 29
Cut-off date to book is August 28, 2018
Airbnb comes highly recommended as an affordable option for families traveling to this area.
Day of Dravet Sibling Camp is a unique experience for siblings of children with Dravet to connect with each other. Much like parents, sibs walk away from Day of Dravet feeling connected and empowered by new friendships formed and memories made. Thanks to our sponsors and volunteers, these experiences are provided at no cost to families.
Children must be 4 years or older and toilet-trained. We will contact you with detailed information about camp two weeks prior to the event.
Schedule (Subject to change)
9:00-10:00 Registration and Drop-off
10:00-12:00 Activities and Discussion facilitated by Laurie Bailey and Carla Schad from Zogenix
12:00-12:30 Lunch with families
12:30-4:30 Field Trip to Boston Science Museum
4:30-5:00 Closing activities & pick up
Registration for this event is now closed.
Please contact email@example.com if you have questions.
As an organization that values fiscal responsibility, we run our Day of Dravet and DSF Family Network programming from sponsorships and grants allowing funds raised by families and community members to be focused on research. This is only made possible by the generous contributions of our sponsors and support of our wonderful volunteers.
Do you have a skill or service to contribute? We are always looking for community members to support our Day of Dravet events. Please consider registering for the DSF Volunteer Network or contact Wendy for more information.