SAVE THE DATE!
DSF’s 6th Biennial Conference is scheduled for June 20-22, 2024, at the JW Marriott, Minneapolis, MN.
This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals. Registration will be available in early 2024.
Our 5th Biennial Conference took place on June 23-24, 2022, in collaboration with Cook Children’s Medical Center in Fort Worth, Texas.
You can now view our recorded sessions from our 2022 Conference, categorized in the four playlists below:
Industry Updates
Clinical Care Updates
Research Updates
Daily Living & Care
Dravet Activity Room
The Dravet Activity Room is sponsored by Ciara’s Light Foundation and offers fun activities for Dravet patients and their caregivers on Friday, June 24, and Saturday, June 25.
The Activity Room is structured like a day camp with two full days of activities, but also with flexibility for campers to come and go as needed. There are a variety of activities which are designed to entertain and accommodate a range of abilities. We want to bring as much joy as possible to those with Dravet during the conference. Activities are led by Lori O’Driscoll unless noted otherwise.
Breakfast, lunch and snacks will be provided. Please indicate any dietary needs and/or allergies on the registration form. We will do our best to accommodate those needs.
Registration is limited to those with Dravet syndrome and a caregiver who must be 18 or older and present at all times. Please note, none of our activities are drop off and there are no medical professionals on site.
Wings of Hope
Saturday, June 25th – 8:00am
The Worthington Renaissance Outdoor Patio
Join us for our biennial butterfly release will honor our children, celebrate hope, and remember those who have passed. Join us for a mass release on the final morning of our conference. Children will receive the book, Senorita Mariposa, courtesy of Zogenix, now a part of UCB.
Butterflies may be purchased in honor or in memory of your loved one at www.dsfwings.org through May 29th.
Sponsored by:
Super Siblings Camp
DSF Super Sibling Camp is available 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. Siblings 16+ can volunteer to participate as a team leader for the camp. The cost for camp includes all activities, as well as breakfast, lunch and snacks. The camp schedule coincides with conference sessions each day.
Onsite activities and offsite field trips are planned for participants. If you do not want your child to participate in offsite activities, you will need to arrange for separate childcare for your child during that time. No children (or patients with Dravet syndrome) are permitted in sessions, as they are being recorded.
Registration fees and camper forms are due by June 10th.Â
Scholarships are available for families in financial need. For questions on the program, email us at info@dravetfoundation.org.
Award in Honor of Ciara O’Driscoll
Recognizes Outstanding & Inspiring Volunteers
From 2010-2015 the Spirit of Hope award was presented annually to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash. It recognizes parents, siblings, and volunteers whose dedication through service to DSF is truly outstanding and inspiring.
In the past, we have honored individuals such as Mike Meyerson of Absolute Motion and The Keating Family. Mike has donated countless hours to produce and oversee the many videos used to promote DSF and raise awareness of Dravet syndrome and related epilepsies. The Keating Family spearheaded Team DSF RACRE (Research and Cure Refractory Epilepsy), consisting of a series of charity runs which benefit DSF. Since its inception in 2011, Team DSF RACRE raised over $420,000 for research.
Ciara’s Butterfly Bash was named in honor of DSF Founder Lori O’Driscoll’s daughter, Ciara O’Driscoll. In January, 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy). In her memory, DSF began presenting an annual Ciara’s Spirit of Hope award to community members starting in 2018. We recognize that all of our parents, siblings, and families are heroes every day, but we want to acknowledge those who go above and beyond and who have made a significant contribution for the Dravet community through their work with DSF.
You can read Ciara’s Story and learn about the Ciara’s Light Foundation at this link. The next award will take place on June 25, at the 2022 DSF Conference.
Venue & Travel Information
FLAGSHIP HOTEL INFORMATIONÂ
Renaissance Worthington Fort Worth
200 Main Street
Fort Worth, TXÂ 76102
817-870-1000
Hotel website
Book your room under our group rate of $199 per night from Wednesday, June 22 through Sunday, June 26.
GROUND TRANSPORTATIONÂ FROM DALLAS/FORT WORTH INTERNATIONAL AIRPORT
Travel Distance: Approximately 25 miles
Travel times and costs below are estimates and final travel times are dependent upon traffic
TAXI
Fee:Â Â $50-60USD; per cab
Travel time:Â Â 25-30 minutesÂ
UBER/LYFT
Fee:Â $30-35USD; per car
Travel time: 25-30 minutes
Driving directions from airport to flagship hotel:
South Exit from Airport to 183 West to 121 South. Follow 121 South to downtown Fort Worth. Take Belknap exit, go 1 mile, turn left on Houston. Turn left on 2nd St. The hotel is on the left.
GROUND TRANSPORTATIONÂ FROM LOVE FIELD AIRPORT
Travel Distance: Approximately 31 miles
Travel times and costs below are estimates and final travel times are dependent upon traffic
TAXI
Fee:Â Â $70-85USD; per cab
Hours: Â 24 hours
Travel time:Â Â 35-40 minutesÂ
UBER/LYFT
Fee:Â $40-45USD; per car
Travel time: 35-40 minutes
Driving directions from airport to flagship hotel:
Head SW on Cedar Springs Rd. toward Contrail Lane. Take 1st right onto W. Mockingbird Lane and another right onto John W Carpenter Fwy N. Merge onto TX-183 W via the ramp on the left. TX-183 W becomes I-820 S. Make slight left onto TX-121 S via exit 24B toward Downtown Ft Worth. Take Belknap exit, go 1 mile, turn left on Houston. Turn left on 2nd Street; hotel is on the left.
DSF Conference COVID-19 Protocol
The health and safety of all attendees at the 2022 DSF Conference remains our top priority. Between now and the event, we will be closely monitoring over venue’s COVID policies, government mandates and policy changes, Centers for Disease Control and Prevention (CDC) guidelines, and public health advancements. As information pertaining to the virus continues to develop, we will adjust our approach as needed and keep you up to date with new developments to ensure a coordinated effort and a safe environment for all DSF conference attendees. Â
An inherent risk of exposure to COVID-19 exists in any public place where people are present. COVID-19 is an extremely contagious disease that can lead to severe illness and death. According to the CDC, senior citizens and individuals with underlying medical conditions are especially vulnerable. By attending the 2022 DSF Conference, you voluntarily assume all risks related to exposure to COVID-19 and agree to abide by our COVID policies for the event. Because we serve a vulnerable medical population, in some situations our COVID policies may be more restrictive than local mandates or current guidelines from the CDC. We strongly encourage attendees to be vaccinated and receive their booster shot when applicable before attending the conference. Help us keep each other healthy. Â
We strongly encourage individuals to be tested for COVID prior to traveling to the DSF Conference. Individuals who test positive should stay home and cancel your registration. Registration fees will be fully refunded. During your attendance at the DSF Conference in Fort Worth, you will be required to support our COVID-19 Safety Measures, and strictly follow our COVID-19 policies and procedures. These COVID-19 policies and procedures may include but are not limited to personal sanitization, mandatory face covering, and social distancing. These policies and procedures may be modified at any time in advance of or during the DSF Conference.
If the COVID situation dramatically worsens, we may decide to cancel and reschedule the conference on or before May 13th. In the event we need to reschedule, all conference registration fees will be fully refunded. While most airlines have loosened their cancellation or rescheduling policies, be sure to consider the possibility of conference cancellation when making your travel plans.
Please regularly check back here. These policies are subject to change at any time and we will continue to revise our policies as needed to reflect the current state of the pandemic. For questions regarding these policies, please contact us at info@dravetfoundation.org.Â
AS OF APRIL 21, 2022 THESE POLICIES INCLUDE:
Face Coverings
We highly encourage masks be worn at all times except while actively eating or drinking in any area that is considered DSF Conference space. DSF suggests that all attendees, vendors, exhibitors, and speakers – regardless of vaccination status – over the age of 2 to wear a medical grade mask (such as a surgical mask or KN95 mask) at all indoor conference sessions, Super Siblings Camp activities, and/or evening social activities. For maximum protection, masks should cover the nose and mouth at all times except while actively eating or drinking.  Medical masks will be available at no cost at the registration table throughout the event. Â
Hand Sanitizer Stations
We will have hand washing facilities and/or sanitizing systems easily accessible to everyone throughout the event. Personal size hand sanitizers will also be included with each registration packet.
Spacing Measures
Social distancing practices will be implemented according to all current venue, local, and state guidelines.
Contact Policy
While we encourage all attendees to minimize their physical contact with others at the conference, attendees may choose to select a green, yellow, or red indicator to wear throughout the meeting to indicate social distancing comfort level.
Red = Greet from 6-feet
Yellow = Elbows only
Green = Handshakes and high fives
Health and Safety Signage
Signage will be placed to remind all attendees to social distance and frequently wash and sanitize their hands.
On Site Screening
Conference attendees, exhibitors, vendors, and speakers will be required to participate in a wellness check before they receive their event badge. Everyone will receive a temperature scan and be asked the following questions before they receive their badge and entry into the conference:
- In the past 24 hours, have you experienced COVID-19 symptoms? (Fever or signs or symptoms of a respiratory infection, such as cough, shortness of breath or sore throat.)
- Have you or people whom you have close contact with, like someone who lives in your house, a relative, a friend, or a co-worker
- tested positive for COVID-19 in the last 14 days or
- had any COVID-19 symptoms in the last 14 days?
Monitoring after Conference
We ask attendees to self-monitor for signs and symptoms of COVID-19 and contact us if they experience symptoms of COVID-19 within 10 days after participating in the conference. Registered attendees will be notified of any potential event exposure.Â
COVID Code of Conduct
To mitigate the spread of COVID-19, DSF requires all participants to adhere to this code of conduct for their participation as an attendee of the 2022 DSF Conference.
Before Leaving Home
- Follow relevant guidance provided by the WHO, CDC, and/or your local health authority regarding exposure, testing, and quarantine related to COVID-19.
- Adhere to government-issued travel restrictions and guidance issued by the WHO, CDC, and/or the local health authority in the regions you will be traveling to and from.
- Stay home if you feel unwell.Â
- Stay home if you are knowingly exposed to COVID-19, develop symptoms of COVID-19, or test positive for COVID-19 within 14 days prior to the event.Â
Onsite During the Event
- Follow guidance from the local health authority for everyday preventive actions to help prevent the spread of viruses including:
- Wash hands often with soap and water for at least 20 seconds, or an alcohol-based sanitizer with at least 60% alcohol
- Avoid touching eyes, nose, and mouth with unwashed hands
- Cover your nose and mouth when coughing or sneezing. Throw unused tissues in the trash.
- Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipes.
- We strongly recommend you wear a properly fitting, medical mask during conference sessions and events.Â
- Adhere to physical distance protocols put in place by DSF, the venue, or local health authorities.
If, at any time, during the conference you feel unwell, learn that you have been exposed to COVID-19 at or less than 14 days prior to the event, develop symptoms of COVID-19, or test positive for COVID-19, do not attend the meeting. Please remain in your hotel room, or at home, and seek medical care.
Adherence to onsite guidelines in place at the time of event is required. Anyone not adhering to the guidelines will be asked to leave or be removed from the event premises and will not be eligible for a refund on their registration costs.
After the Event
If you learn that you have been exposed to COVID-19 at the event, were exposed less than 14 days prior to the event, or develop symptoms of COVID-19, or test positive for COVID-19 up to 10 days after returning home, please contact DSF at info@dravetfoundation.org so that we can alert conference attendees of potential exposure anonymously.
