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DSF BIENNIAL CONFERENCE

Dravet Syndrome Foundation is proud to present its 1st Biennial Family and Professional Conference in collaboration with Lurie Children’s Hospital June 26-29, 2014 in Chicago, Illinois. The conference is jointly sponsored by Northwestern, Feinberg School of Medicine and has been approved for AMA PRA Category 1 Credit™.

 

The Conference will bring families together with leading clinicians and researchers to discuss new developments in Dravet syndrome and associated intractable childhood epilepsies. The event will include over a dozen topics, as well as parent-to-parent roundtables and opportunities for families to socialize. Brabant Pharma has established a Scholarship Program which families may apply for to cover conference registration and hotel costs.

 

The Conference will take place at Lurie Children’s Hospital.  Due to hospital policy, no children are able to attend the sessions at the hospital.  We will be offering a Sibling Program and Children’s Activity Center at the Hyatt Regency Chicago, our hotel headquarters.

 

Family Registration Closes June 20th, Professional Registration Closes June 22nd, ON SITE REGISTRATION IS NOT AVAILABLE.

 

Family Member Registration

Professional Registration 

Agenda & Speakers

Hotel Info

FAQs

Exhibitors - contact Lori

Sibling Program

Children’s Activity Center

Brabant Scholarship Program(families may apply to attend for free)

DSF Facebook Page

Conference Facebook Page

 

The information on this page is the PRELIMINARY conference information. Please check back often for updates.

 

The Target Audience for the Conference consists of pediatric epileptologists, neurologists, adult epileptologists and neurologists, ER physicians and parents/caregivers of those with Dravet syndrome and related seizure disorders.

 

For information on CME Course Learning Objectives, please click here  

 

Agenda & Speakers

Conference At A Glance

Thursday, June 26:

1pm-4pm Registration

4pm-7pm Welcome Reception

 

Friday, June 27:

8am-10am Registration and Breakfast

10am-5:30pm Conference

7pm Family Social Event

 

Saturday, June 28:

8am-9am Registration and Breakfast

9am-5pm Conference

7pm Family Social Event

 

Sunday, June 29:

8am-9am  Registration and Breakfast

9am-12pm Conference

12pm-1pm Take-away Lunch

 

The Conference will take place at Lurie Children’s Hospital.  Due to hospital safety & health policies, children are not able to attend the sessions at the hospital.  We will be offering a Sibling Program and Children’s Activity Center at the Hyatt Regency Chicago, our hotel headquarters.

 

Click herefor current event agenda.

Click herefor current speaker list.

 

 

Hotel Info

Set within the epicenter of the city, the AAA Diamond Hyatt Regency Chicago is conveniently connected to the Illinois Center and within minutes of the Magnificent Mile.  It is located at 151 E Wacker Drive, 1 mile from Lurie Children’s Hospital.

 

Room Rate: $189 per night for single/double occupancy

 

Reservations must be made by May 26, 2014 and are available on a first come, first serve basis.

 

The Hyatt Regencey Chicago is Sold Out for Thursday, June 26th and there only a limited amount of rooms in the DSF room block left for Friday and Saturday nights.

 

Rates at the Comfort Suites Hotel are $219-$269 during the conference.  They are located 2 blocks West of the Hyatt at 320 N. Michigan Avenue. Reservations can be made by calling 312-884-1208 or online at www.comfortsuites.com. Please note, DSF does not have a room block being held for us at Comfort Suites. These are individual rooms and may sell out fast.

 

Click Here to make your reservation with our special conference rate or call 1-312-565-1234 and mention Dravet Syndrome Foundation Conference.

 

For general information on the Hyatt Regency Chicago including hotel features, driving directions, and local information, Click here

 

 

Frequently Asked Questions

How often do you organize your family & professional conference?

This is the 1st Biennial Conference for the Dravet Syndrome Foundation.  The next conference will take place in 2016.  We change the location for each conference to a different region so families from all over the country can participate.

 

How long is the conference?

The DSF Family & Professional Conference is three and a half days long; it starts on Thursday evening and ends on Sunday.

 

What is included in the registration fee?

Your registration fee includes admission for one adult to all of the sessions, breakfast and lunch on all days, and the welcome reception on Thursday evening.

 

Are children allowed to attend the conference?

Due to hospital safety & health policies, NO CHILDREN ARE PERMITTED to attend any sessions at the hospital.  We will be offering a Sibling Program and Children’s Activity Center at the Hyatt Regency Chicago, our hotel headquarters.

 

If two adults are attending, but one is staying with their child at the hotel, do we both have to register and pay for a conference pass?

Only one adult would need to register, and one conference pass would be provided for the two adults to share.  Please note, this option is only available for families/partners traveling together and does mean that only one can attend the sessions at a time. Both individuals are invited to the Welcome Reception on Thursday evening.

 

Are Family Scholarships available?

We are pleased to announce the DSF Family Scholarship Program sponsored by Brabant Pharma.  A limited number of scholarships are available to individuals or families in need of financial assistance for registration fees and two night’s hotel accommodations; however, travel expenses are not included.  Applications are due by April 15th and recipients will be notified by May 1st.  Click here for application.

 

Is childcare available for children with Dravet syndrome?

No, we do not provide childcare for children with Dravet during the Conference.  However, there will be a Children’s Activity Center at the Hyatt where a parent/caregiver can entertain their child.  Activities such as movies, coloring books and games will be provided.

 

Is childcare available for siblings?

There will be a Sibling Program at the Hyatt, available on Friday, Saturday and Sunday.  Parents will need to register their child, with a cost of $30 per child for the three days.  This cost includes activities, lunches, and afternoon snacks for all three days.  The Sibling Program is a drop-off program available for siblings between the ages of 5-18 who are able to function independently in a group setting and do not require one-on-one supervision.

 

Who attends this meeting?

The audience is typically made up of DSF family members (75%) and epilepsy professionals (25%).

 

What are the CME Program Learning Objectives for the Conference?

Our Learning Objectives for the Conference:

  • Identification of Dravet syndrome in regards to clinical presentation, clinical/seizure evolution and appropriate evaluation.

 

  • Recognize the importance of genetic evaluation in children with intractable epilepsy focusing on the SCN1A mutation that is highly associated with Dravet syndrome.

 

  • Plan an appropriate treatment strategy for children with Dravet syndrome: Avoid seizure triggers, identify which medications may worsen seizures, and identify which medications have proven to be the most beneficial for seizures in Dravet syndrome.

 

  • Identify risk factors for SUDEP (Sudden Unexpected/unexplained Death in Epilepsy) and review current research regarding increased risk of SUDEP in children with Dravet syndrome.

 

  • Discuss and review current clinical research in Dravet syndrome to obtain maximum outcomes in current evaluation/treatment of children with Dravet syndrome.

 

  • Discuss and review current lab research in Dravet syndrome including animal models and pluripotential stem cell research that have advanced our understanding of the pathophysiology in Dravet syndrome.

 

  • Identify, evaluate and manage co-morbidities in Dravet syndrome including cognitive impairment, behavior disturbance, sleep disorders and gait issues to maximize the child’s developmental, cognitive, and motor potential and to maximize the child’s quality of life.

 

How do I become a Conference Exhibitor?

Please contact Lori O’Driscoll at lori.o@dravetfoundation.org for more information.

 

What is the dress code?

Most families feel comfortable wearing business-casual clothes or casual-neat attire. Temperatures in Chicago in June  are typically warm in the low to mid 80’s.

 

How far is the hotel from the airport?

The Hyatt is 18.5 miles (aprox. 3o minutes) from O’Hare International Airport and 12 miles (aprox.  25 minutes) from Chicago Midway Airport.

 

Are there refrigerators in the hotel rooms?

If you need a refrigerator, please contact the Hyatt Regency directly to request that one be available for you during your stay.

 

Is the hotel wheelchair accessible?

Yes, the Hyatt Regency Chicago is wheelchair accessible and ADA compliant.

 

Where is the nearest hospital?

Lurie Children’s Hospital, where the Conference sessions are being held, is located just one mile away and has a comprehensive epilepsy center.

 

 

Sibling Program

The Sibling Program is a drop-off program available for siblings between the ages of 5-18 who are able to function independently in a group setting and do not require one-on-one supervision.  The Sibling Program will be coordinated by Kathyrn “Kat” Davitt, MOT, CCLS, OTR, a Child Life Specialist at the Comprehensive Epilepsy Center at Cook Children’s Medical Center in Forth Worth, Texas, with additional support provided by the Epilepsy Foundation of Chicago.

 

The cost is $30 per child and includes lunch during the Conference (Friday-Sunday).  Participants must be potty-trained.  All participants must pre-register in order to attend.  Space is limited and a wait list will be started once the Program reaches capacity.  Click here to register.

 

The program schedule is:

Friday  9:30am-6:00pm

Saturday  8:30am-5:30pm

Sunday  8:30am-12:30pm

 

Children’s Activity Center

Although one-on-one childcare is not provided for children with Dravet syndrome at the Conference, there will be a Children’s Activity Center at the Hyatt where a parent/caregiver can entertain their child while another parent/caregiver is attending conference sessions.  Activities such as movies, coloring books and games will be provided.  The Activity Center will be open during Conference hours.  Children are not to be left unaccompanied in the Center.

 

 

Scholarships

We are pleased to announce the DSF Family Scholarship Program sponsored by Brabant Pharma. Full scholarships have already been awarded. However, we have a limited number of scholarships that cover registration fees only (hotel and travel expenses are not included).  Applications will be accepted through May 15th and will be awarded on a rolling basis.  Click here for application.