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Pediatric Epilepsy Surgery Conference and Family Reunion
Wed, Jul 5, 2017, 3:00 PM – Sat, Jul 8, 2017, 8:00 PM EDT
Surround yourself with people who get it, learn from experts, and form lifelong bonds. This year's event will be held at the spectacular Hilton Orlando resort, with two temperature-controlled pools, lazy river, whirlpool, a winding water slide, tennis, volleyball, and basketball courts, an inexpensive trolley ride away from International Drive's shopping, attractions, and dining experiences, including SeaWorld and Universal Orlando Resort, and a 7-mile shuttle ride away from DisneyWorld, Epcot, and other area attractions!
Some highlights of this year’s conference include:
Professional presentations under the headings of medical, physical, sensory, financial planning, education, and adult life covering childhood epilepsy surgeries including hemispherectomy, TPO, lobectomy, and corpus callosotomy;
Adults 18+ who had childhood epilepsy surgery are invited to participate in self-advocacy, financial management, and employment workshops;
The full conference package includes lunch each day (except Wednesday), Wednesday evening pizza party, and Saturday night banquet with Peter Pan, Tinkerbell, and pirates. Gluten-free options will be available;
Supervised kid camp for registered attendees ages 6 months –17 years at no additional charge*;
Gadget expo and resource fair;
Tickets must be purchased no later than June 1, 2017.
Confirmed speakers to date include: Dr. James Baumgartner, Surgical Director of the Comprehensive Pediatric Epilepsy Center, Florida Hospital for Children, Orlando, Florida; Dr. Hi Lee, Director of the Comprehensive Pediatric Epilepsy center, Florida Hospital for Children, Orlando, Florida; Carrie Clark, CCC-SLP, founder of the online resource Speech and Language Kids; Dr. Lucina Uddin, principal investigator of the Brain Connectivity and Research Laboratory, University of Miami; Laura Dench, feeding therapist, Johns Hopkins All Children's Hospital; Jennifer Costa, pediatric physical therapist and director of the Therasuit Method Intensive Program, Johns Hopkins All Children's Hospital; Dr. Stephen Boyles, DC, Certified Kinesiotaping Instructor.
A block of rooms at the Hilton Orlando are now available starting at $159 per night. Call +407-313-4300 and ask to book your room for "Pediatric Epilepsy Surgery Conference 2017". You must mention "Pediatric Epilepsy Surgery Conference 2017" in order to receive the discounted rate. Mandatory resort charges of $25 per day are WAIVED if you mention the conference!
The deadline to book your room at the discounted rate is June 5, 2017. Absolutely no exceptions!
The hotel will have daily, unsupervised activities for children as well.
Things to do
The iRide Trolley is available to take you to International Drive and attractions such as Universal Studios and Sea World. Please note it does not go to the DisneyWorld resort. Click here for more information.
Mears Transportation has a paid shuttle service from the hotel to the DisneyWorld resort. We're working on getting discount shuttle passes for our registered conference attendees. Check this website often for updates!
International Drive is an iRide trolley ride away from the resort. There are many things to do there, including miniature golf, Universal Studios, Sea World, Madam Tussaud's, Sea Life Aquarium, and other fun attractions. - click here for more information!
Amusement park tickets
Exclusive "After 3 pm" tickets and specially priced multi-day tickets are available for pre-purchase online. The multi-day tickets offer pre-arrival savings of 10% and include one (1) complimentary admission to these additional Disney Experiences
- Day at a Water Park! Disney’s Typhoon Lagoon Water Park or Disney’s Blizzard Beach Water Park or
- One Round of Golf! Disney’s Winter Summerland or Disney’s Fantasia Gardens Miniature Golf Courses (before 4 p.m.), or A round of golf at Disney’s Oak Trail Golf Course, our 9-hole walking course.
For advance purchase of specially priced Disney Meeting/Convention Theme Park tickets, please call 407-566-5600 or click here. Please note the cut-off date for advance purchase savings is July 4, 2017.
All attendees must sign a liability release and photo release prior to attending the conference. Parents are required to sign on behalf of children under age 18, or for those over 18 if the parent is the legal guardian for that individual. No exceptions.
At no additional charge*, a kid camp - in the form of supervised child activity rooms - is available on Thursday, Friday, and Saturday for children ages 6 months to 17 years who have had epilepsy surgery and their siblings only from 9 a.m. to whenever sessions end (typically at 4 pm, except for short days when we give families pool and resort time.) This will include a quiet room for babies and toddlers or older children with sensory issues, as well as separate rooms for older children and teens with age-appropriate activities.
Please note that nurses and one-on-one aides are not provided. If your child requires 1:1 supervision or nursing care, we ask that you or a member of your family take turns in the room with your child. Each parent will be required to sign a childcare waiver when they drop their kids off at kid camp.
Many families bring family members such as teen-aged siblings or grandparents to help with child care, or babysitters and dedicated aides. While we do our best to make kid camp a fun and exciting place for all children, short attention spans and restless children often cannot stay in camp for more than two hours or so. If your child needs intensive supervision, we strongly encourage you to bring someone with you who can attend to your child while you are in conference sessions.
YOU MUST pre-register for kid camp no later than one month before the conference. This allows us to properly plan for the number of children in attendance. Registration information will be sent to you after you purchase tickets to the conference. Note that registering your child for kid camp is a separate process than purchasing conference tickets for them. Purchasing conference tickets for your child does not automatically register your child for kid camp.
*Donation request: Kid camp is run by a third-party organization. Although it is free to families, the cost is approximately $11 per child per hour which is covered by the organizer. Regardless of whether your child attends for one hour or the full three days, organizers are charged for the entire three-day block of time which amounts to approximately $200 per child. Donations in the amount of $75 per child are requested, but not required, to help us defray the costs of kid camp. Thank you!
The hotel will have unsupervised daily activities for children which may be appropriate for typically developing siblings and independent children with special needs. We will update this website with the hotel's activity list soon.
The hotel is approximately 11 miles from the Orlando International Airport. There is no free shuttle services from the airport to the hotel, however we're busy working with our travel agent to see if there's a service that can provide us with discounted shuttle tickets for our families. Stay tuned for more information!
We have partnered with Luxe Travel Management to help find you the best deals on airfare. Luxe has been able to obtain a discounted rate from Delta Airlines and is busy negotiating reduced airfare with other carriers as well. Check this site often for updates.
To book your discounted airfare, email Luxe at email@example.com or via phone at 866.651.8940.
Use #HemiCon2017 in your social media posts!
Are you on Facebook? Click here for our Facebook page to engage with other families, ask questions, and get frequent updates about the conference.
We do not provide travel scholarships to the conference because we underwrite most of the cost of the conference (which is approximately $500 per person - regardless of age!); however, scholarships may be available from the Hemispherectomy Foundation for families affected by hemispherectomy surgery. Travel scholarships from the Hemispherectomy Foundation are available on a first-come, first-serviced basis. Interested families should contact CrisHall@HemiFoundation.org to request assistance after April 1, 2017, and include in your email how many are traveling and how you plan to travel (e.g. car, plane). Typical awards are from $500 - $1,000.
According to the IRS, "payments made for admission and transportation to a medical conference relating to a chronic disease that you, your spouse, or your dependents have (if the costs are primarily for and essential to necessary medical care). However, you may not deduct the costs for meals and lodging while attending the medical conference." For more information, click here.
From time to time, researchers may provide you with copies of assessments or data that you may take home. In the past, comprehensive reading assessments have been performed so that parents can share them with their educational team. This year, we have invited several literacy researchers who may speak at the conference and have indicated their interest in collecting data. We will keep you posted on whether they will provide assessment data to you once their research collection is confirmed.
The Brain Recovery Project: Childhood Epilepsy Surgery Foundation encourages scientific research programs, especially those which address neuro-rehabilitation and functional outcomes after epilepsy surgery. Researchers who are interested in collecting data at the conference should email us here. Medical and rehabilitation professionals are encouraged to attend the conference to learn from our speakers and to meet our families, learn about their challenges, and better understand functional outcomes after hemispherectomy throughout the lifespan.
A common complaint we hear is that the conference isn't long enough. Parents want more information which is why this year we have added third full day to the conference. Although there will be free time in the late afternoons, you are not in any way obligated to attend all sessions. Most people choose a track they want to follow or pick and choose from various topics. You're welcome to enjoy free time at any time!
History of the conference
Over the past several years, we've noticed that families who have not had hemispherectomy surgery, but instead other procedures such as hemidecorticectomy, temporal-parietal-occipital disconnection, and various resection or disconnective surgeries to stop drug-resistant epilepsy, have attended what has historically been called the International Hemispherectomy Conference and Family Reunion and which was originally organized by the Hemispherectomy Foundation until 2016. Because we see a tremendous need in our community for families to understand what happens after epilepsy surgery, in 2017, we'll address issues after resective and disconnective pediatric epilepsy surgeries at this conference.
We will continue to have breakout lunches by etiology (the underlying condition which causes the seizures, such as hemimegalencephaly, Rasmussen's encephalitis, cortical dysplasia, and stroke) as well as by procedure (hemispherectomy, corpus callosotomy, lobar resection) so that families can connect.
Information on sponsorship opportunities are available soon!
Sponsors this year include:
The Hemispherectomy Foundation - Platinum-level sponsor - $10,000
The conference is solely hosted and oranized by The Brain Recovery Project: Childhood Epilepsy Surgery Foundation.
We reserve the right to make changes to the information herein, including schedule, without notice, at any time.
How can I contact the organizer with any questions?
You can email the organizer at firstname.lastname@example.org.