DSF Biennial Conference

June 20-22, 2024, at the JW Marriott Minneapolis Mall of America

In collaboration with Mayo Clinic and the Minnesota Epilepsy Group

Our 2024 conference takes place at the JW Marriott Minneapolis Mall of America, just 2.5 miles from the Minneapolis-St Paul International Airport. This 3-day event is crafted to bring together all stakeholders dedicated to enhancing the quality of life for individuals with Dravet syndrome – including families, caregivers, clinicians, researchers, and professionals in the biopharmaceutical industry. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals. Registration is now open. This year, we are excited to offer a virtual option for those unable to travel to the event.

  • Stay informed with updates from the industry, including clinical trials and new products.
  • Gain insights into the latest developments in research, clinical care, and daily management.
  • Our engaging patient activity room provides enjoyable experiences for patients of all ages (must be accompanied by a caregiver).
  • Our VIP Sib Camp offers connections and fun activities for siblings.
  • Interact with sponsors and exhibitors to explore valuable resources.
  • Join us for dinner each night to connect with other families and stakeholders in the community.

Questions? Contact us at conference@dravetfoundation.org.

*Agenda subject to change

Thursday, June 20, 2024

TimeTopicSpeaker
12:00-1:00Early Registration Packet Pick up (you can also register anytime on Friday or Saturday) 
1:00-1:15Welcome 
1:15-1:35Industry Update – Biocodex 
1:35-1:55Industry Update – Neurelis 
1:55-2:15Industry Update – UCB 
2:15-2:35Industry Update – UCB 
2:35-2:55Industry Update – Takeda 
2:55-3:15Industry Update – Longboard 
3:15-3:35Industry Update – TBD 
3:35-4:05Industry Update – TBD 
4:05-4:15Break 
4:15-4:45Dravet Syndrome OverviewLinda Laux, MD
4:45-5:15Tips for First Time Attendees 
5:15-5:45Takeda Caregiver Video / Turpin Family Meet & GreetTurpin Family
6:00-7:30Dinner 

Friday, June 21, 2024

TimeTopicSpeaker
8:00-8:45Registration opens + Breakfast 
8:45-9:00Welcome 
9:00-9:45Current Therapeutic Treatment of Dravet SyndromeElaine Wirrell, MD
9:45-10:15Managment of Status EpilepticusDouglas Smith, MD
10:15-11:00Seizure Monitoring DevicesTom Stanton
11:00-11:15Break 
11:15-11:45Dravet Syndrome in AdulthoodDavid Burkholder, MD
11:45-12:15Movement & Gait Disruptions in Dravet SyndromeDanielle Andrade, MD, MSc, FRCPC
12:15-1:00Clinical Trial UpdatesM. Scott Perry, MD
1:00-2:00Lunch 
2:00-2:45Genetics of Dravet SyndromeIngo Helbig, MD
2:45-3:15Neurostimulation and Dravet SyndromeDonnie (Keith) K. Starnes II, M.D
3:15-4:00Neuropsychiatric Care in Dravet SyndromePriscilla Duong, PhD
4:00-4:15Break 
4:15-5:00Sleep Disruptions in Dravet SyndromeChris Matarese, DO
5:00-5:30Animal and Cell Models of Dravet SyndromeLori Isom, PhD
5:30-6:00Accessing ResourcesPaula Roberts, LICSW, MS
6:30-8:00Dinner 

Saturday, June 22, 2024

TimeTopicSpeaker
9:00-10:00Wings of Hope + Breakfast 
10:00-11:00Genetic Therapy OverviewJoseph Sullivan, MD & Veronica Hood, PhD
11:00-11:30CHOP Project RecruitmentIngo Helbig, MD
11:30-12:00Advocacy & LegislationShannon Cloud
12:00-12:30Engagement for Impact: Volunteering & Fundraising with DSFDSF Staff
12:30-1:30Lunch 
1:30-4:30Workshop 1: Balancing Hope & Reality
Workshop 2: CARE Binder
 
4:30-5:00Wrap up 
6:00-7:30Dinner 

Why Attend?

Our biennial conference brings together all stakeholders dedicated to enhancing the quality of life for individuals with Dravet syndrome – including families, caregivers, clinicians, researchers, and professionals in the biopharmaceutical industry.

This three-day event begins Thursday with industry updates, followed by an overview of Dravet syndrome and a session with tips for first time attendees at our venue, the JW Marriott Minneapolis Mall of America in Bloomington, Minnesota.

Friday is a full day of programming. Continuing Medical Education credits are available for medical professionals on Friday, but all attendees are encouraged to attend these sessions. Session topics  include education related to the latest in clinical care, and research updates. Speakers are leading clinicians and researchers.  Friday evening attendees will enjoy a dinner reception and brief program.

Saturday is another full day of programming with topics based around living with Dravet syndrome and daily care. Before the start of our morning sessions, we will host our 3rd Wings of Hope butterfly release to celebrate hope and remember those who have passed. In the afternoon, we will offer two workshops where attendees can take a deeper dive on the topics presented as well as connect with others. Saturday evening attendees will enjoy a dinner reception and brief program where we will award the Ciara’s Spirit of Hope Award.

Is there a virtual attendance option?

This year we are pleased to offer a virtual attendance option for those unable to travel to Minnesota. This ticket will all live access to sessions as well as the ability to watch recorded sessions on demand through 12/31/2024. Tickets are $75 and may be purchased through the Registration button on the conference site.

Will there be a sibling program?

We are pleased to once again offer our VIP Super Sibs Camp on Friday and Saturday. 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 camp schedule coincides with conference sessions each day. No children (or patients with Dravet syndrome) are permitted in conference sessions, as they are being recorded. If you do not want your child to participate in VIP Super Sibs Camp, you will need to arrange for separate childcare for your child during that time.

Can my loved one with Dravet syndrome attend sessions?

Conference sessions are being recorded, so no patients or siblings are permitted to attend. We do offer a patient activity room. 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. All patients must be accompanied by a caregiver at all times. Patients with Dravet syndrome as well as siblings are welcome at evening social events.

Is financial support available?

DSF will offer a limited number of conference scholarships which will cover the cost for registration as well as a 3-night hotel stay. Information on this program and other suggestions for financial assistance can be found on the conference page, under the Conference Assistance Opportunities tab.

 

Virtual Attendance 

This year if you are unable to travel to Bloomington, you can still grab a virtual front-row seat to attend our live event.

A limited number of virtual registrations are available for $75. Registrants can join live for all sessions, submit questions, and will have access to post-conference on-demand recorded sessions on our virtual platform through December 31, 2024. Register now!

Venue & Travel Information

FLAGSHIP HOTEL INFORMATION 
JW Marriott Minneapolis Mall of America
2141 Lindau Ln
Bloomington, MN  55425
(612) 615-0100
Hotel website
Driving directions

DISCOUNTED ROOM BLOCK
$249 a night + tax available at this link.

There are a limited number of rooms with 2 Queen beds available. We encourage those traveling alone to reserve a King bed to leave the other option open for families who are traveling to the conference.

_______________________________________________

The JW Marriott Minneapolis Mall of America is located 2.5 miles from the Minneapolis / St Paul International Airport
On-Site Parking: Daily: $24
Valet: Daily: $34
0-6 Hours Self-Parking $15, Event Self-Parking $15, Event Valet Parking $19

Conference Scholarships

DSF will provide a limited number of family scholarships to individuals or families who might otherwise not be able to attend our 2024 Family & Professional Conference.

There are four types of scholarships available:

  • Virtual registration: fees covered for one individual
  • In-person registration only: in-person registration fees covered for one individual
  • Individual Scholarship: registration for 1 adult and up to 3 nights hotel accommodations
  • Family Scholarship: registration for up to 2 adults, 2 children, and up to 3 nights hotel accommodations. *Note: Hotel fire regulations only allow up to 4 people per double bed room and up to 3 people for king rooms. There are no exceptions.

Please complete and submit your scholarship application at this link by March 29th, 2024. Notifications on scholarship awards will be made April 5, 2024. For questions, please contact info@dravetfoundation.org.

Other community-based civic organizations may offer full or partial funding for individuals and families to attend conferences related to disability research, advocacy and services. Please click on the “Other Assistance Opportunities” tab on the conference webpage for additional information.

Conference Assistance Opportunities

We are aware that the costs to attend the conference can be prohibitive for some families. Below we have listed some resources that may help with registration and/or travel costs.

National Agencies

  • The ARC of the United States: Each chapter offers different programs and services so you should check with  your local chapter to see what is available. https://thearc.org/find-a-chapter/
  • The National Association of Councils on Developmental Disabilities (NACCD):  Every state has a DD Council with different programs and services. Some states set aside money for conference attendance and education. You can find your Council on the NACCD website at https://nacdd.org/councils/

National Organizations

  • Angel’s Hands Foundation (AHF): This all-volunteer non-profit organization made up of a growing community of family, friends, volunteers, partners and donors, dedicated to improve the quality of life for individuals living with rare and undiagnosed medical conditions in Utah. They offer conference scholarships. You can learn more or apply for assistance to attend national rare disease conferences at https://www.angelshands.org/services
  • National Organization of Rare Diseases (NORD): NORD offers a Rare Disease Educational Support Program that reimburses registration costs for rare disease-specific educational offerings such as workshops, nutrition classes, and conferences, as well as limited financial assistance for travel and lodging costs. For more information and to apply visit https://rarediseases.org/patient-assistance-programs/

Medicaid Waiver Programs

If your child is enrolled in your state’s Home and Community-Based Services program, check with your case manager. Some waivers offer educational assistance for parents to attend conferences, paying the registration fees.

Other Potential Funding Sources 

Fund may be available through your church or synagogue or through local fraternal organizations or clubs such as Kiwanis, Rotary or Lions Club.

If you are aware of other funding sources, please contact us at conference@dravetfoundation.org so we may add them here.

Award in Honor of Ciara O’Driscoll Recognizes Outstanding & Inspiring Volunteers

Click here to nominate an individual or family for this year’s award.

Click here to read more information about this award and past award recipients.

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 22nd, at the 2024 DSF Conference. Nominations will be accepted beginning March 1st.

Dravet Activity Room

ciara's light foundation logo
 

The Dravet Activity Room is sponsored by Ciara’s Light Foundation and Biocodex and offers fun activities for Dravet patients and their caregivers on Friday, June 21, and Saturday, June 22.

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. 6-8 weeks before the event, registered attendees will receive a form where they  can indicate any dietary needs and/or allergies, as well as preferred activities. We will do our best to accommodate dietary 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.

Additional sponsor support from:

Biocodex logo

 
 

VIP Super Sibs Camp

Our VIP Super Sibs 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.

Offsite activities are planned for participants at the Mall of America, which is walkable from our flagship hotel. No children (or patients with Dravet syndrome) are permitted in conference sessions, as they are being recorded. If you do not want your child to participate in VIP Super Sibs Camp, you will need to arrange for separate childcare for your child during that time.

Parents can expect to receive camp paperwork about a month before the event that will need to be completed in order for registered children to participate in camp. Scholarships for camp are available for families in financial need. For questions on the program, email us at conference@dravetfoundation.org.

Sponsored by:

Biocodex logo

Wings of Hope

Saturday, June 22nd – 9:00am
JW Marriott Front Court

Join us for 3rd our biennial butterfly release will honor our children, celebrate hope, and remember those who have passed. Join us for a mass release of butterflies on the final morning of our conference, June 22nd. 

We invite you to sponsor a butterfly in honor or in memory of a loved one for just $25.00 at www.dsfwings.org from March 1st – May 24th. There is no limit to the number you can order.

 

Sponsored by:

UCB

Travel Tips

Watch this webinar and learn from others:

In 2023, DSF offered the webinar, Inspiration and Preparation for Traveling with Dravet, that offers useful travel tips and personal experiences from patient familes.

Download the Off We Go app:

Going on a Plane is part of a series of digital books that breaks down new experiences into 12 simple steps for kids in a fun and interactive way. The books supports kids in activities they might otherwise find overwhelming and are especially effective for children with intellectual disabilities/autism spectrum disabilities. You can find the app here.

Reach out to the TSA:

TSA has a toll-free helpline called TSA Cares where you can get your questions about screening, procedures and what to expect at the airport answered. TSA Cares 1-855-787-2227. You can also ask for a TSA Passenger Support Specialist – they have extensive training in screening passengers with special needs. TSA also makes special accommodations for travelers with severe disabilities. If your child falls within this designation, they can be screened without removing their shoes (kids under 12 are not required to remove their shoes) in a separate screening area where they can be seated for the duration of the screening process.

Pre-Board and carefully consider seat selection:

Being able to board early, when the plane is mostly empty of bustling people is a good idea. In addition, you might think that being close to the front of the plane would be preferred, but a lot of parents in the know recommend sitting as far to the back as you can. In that way you have easy access to bathrooms, the flight attendants have their station near, and you can deplane last – avoiding the chaos of boarding and deplaning altogether.  

Carry documentation:

Make sure you have the paperwork in order that provides documentation. Ask your child’s doctor for a letter that explains your child’s diagnosis and any medication they take. This is a simple step that can save you stress on travel day.

Keep things familiar:

If you can have a bag packed for your child with some favorite toys or activities that can be with them at all times, and some snacks he or she enjoys, along with one or two new items for a little variety (you can’t go wrong with a tablet pre-loaded with a great movie or two), you’ll be a hero. And we always recommend keeping a change of clothes handy – for your kiddo, but also one for you!

Medical Ketogenic Diet:

For patients on the Ketogenic Diet, this blog post, Summer Traveling on the Medical Ketogenic Diet, may be helpful.

*Portions of these tips are from Air Travel Tips for Developmentally Disabled Kids

 

Presenting Sponsor

Biocodex logo

Platinum Sponsors

platinum sponsors 1.29.24

Gold Sponsor

gold sponsor

Silver Sponsor

Longboard 300 x100

Bronze Sponsor

Encoded Therapeutics logo
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