#BetterTogether2024

Surround yourself
with people who get it

If your child has had epilepsy surgery, or may need it, this conference is for you. Learn from some of the world’s top neuro-professionals, educators, researchers, and rehabilitation clinicians who will present rich sessions on issues related to pediatric epilepsy surgery.

Exhibitors will share their resources for our community and professional childcare is available so that kids have safe and supervised fun.

Special session track and bowling outing for self advocates (teens/adults who had surgery in childhood.)

Join hundreds of families from around the world and enjoy two days of learning, fun, and fellowship in lively Boston, Massachusetts.

Our conference theme this year is “Better Together.” It’s a reminder that even though sometimes obstacles seem insurmountable, we’re all in this together.

Speakers + Sessions

Reoperation Is Seizures Return: Scelling Stone, MD, Co-Director of Epilepsy Center, Stereotactic and Functional Neurosurgery, Boston Children’s Hospital; Aria Fallah, MD, MsC, Chief, Pediatric Neurosurgery, UCLA

Minimally Invasive Epilepsy Surgery: Sandi Lam, MD, Division Chief, Neurosurgery, Ann and Robert H. Lurie Children’s Hospital of Chicago; Ben Kennedy, MD, Director of Epilepsy and Functional Neurosurgery, Children’s Hospital of Philadelphia

What’s New In Responsive Neurostimulation: Mark Richardson, MD, Director, Functional Neurosurgey, Massachusetts General Hospital; Taylor Abel, MD, Chief, Pediatric Neurosurgery, UPMC Children’s Hospital of Pittsburgh

Visual Behaviors and their Impact: Lacey Smith, M. Ed., TVI, Perkins School for the Blind

How to Get Help – Taking Advantage of Social Supports: Chris Ryan, MSW, LCSW, Boston Children’s Hospital; Megan Keeler, LSW, MPH, Lurie Children’s Hospital

Strategies for Academic Achievement After Epilepsy Surgery: Joanna Christodoulou, MEd, Director, and Amy Maguire, MS, Doctoral Researcher, Brain, Education and Mind Lab, MGH

Seizure Monitoring Devices: Mary Duffy, Executive Director, Danny Did

If Seizures Return: Promising Genetic Precision Treatments: Christelle Achkar, MD, Neurologist, Boston Children’s Hospital

Walking and Driving with Homonymous Hemianopia: Alex Bowers, PhD, Associate Scientist, Schepens Eye Research Institute @ Harvard

Rhizotomy Surgery for Spasticity: Weston Northam, MD, Co-Director, Cerebral Palsy and Spasticity Center, Boston Children’s Hospital

Should My Child Have Epilepsy Surgery? Making the Decision: George Ibrahim, MD, PhD, pediatric neurosurgeon, The Hospital for SickKids

Managing Post-Traumatic Stress: Brynn Huyssen O’Reilly, PhD, trauma psychologist, Peace Corps

Self-Management in Epilepsy: Toby Loddenkemper, MD, pediatric neurologist, Boston Children’s Hospital, Elaine Kiriakopoulos, MD, Director, HOBSCOTCH Institute for Cognitive Health& Well-Being Dartmouth-Hitchcock Epilepsy Center

Supported Decision-making for Independence and Growth: Ronna Carras, Director of Training, Center for Guardianship Excellence

Understanding Guardianship of an Adult:Heather Connors, MD, gerontologist and ethical guardianship advocate, Center for Guardianship Excellence

Hemispherectomy In Research – Publications from the Global Pediatric Epilepsy Surgery Registry: Michael Granovetter, PhD, epilepsy surgery researchers, University of Pittsburgh

Decisionmaking for Parents of Medically Complex Children: Jennifer Siedman, MEd Director of Community Engagement, Courageous Parents Network

What I Wish I Knew Then – Parental Insights from the Hemispherectomy Journey: Parent Panel

Ask Me Anything! Panel of adults who had hemispherectomy in childhood

and more!!!

General Information

Registration closes July 10, 2024, at midnight EST

  • Free for adults who had surgery in childhood!
  • Early bird rates through April 30, 2024 at midnight EST:
    • adults $179
    • youth (10 – 17) $99
    • children (3 – 9) $69;
    • free for children 2 and under
  • Regular rates May 1, 2024, – July 10, 2024 at midnight EST:
    • adults $199
    • youth (10 – 17) $119
    • children (3 – 9) $89
    • free for children 2 and under

California families: Admission to this conference may be paid by your regional center. Contact your service coordinator for more information.

Please note that you’re not fully registered until every adult in your party signs a waiver of liability. This includes signing for any children or conserved adults under your care who will be coming to the conference. If your child is attending kid camp, a separate waiver and information form is also required by the company that runs the camp.

Sign the CONFERENCE WAIVER

Sign the KID CAMP WAIVER

This year’s event is at the beautiful Sheraton Boston located at 39 Dalton Street, Boston, MA 02199. Our special room rate is $239 per night plus taxes and fees.

The Sheraton is approximately is 8 miles from the Boston Logan Airport. There are several restaurants walking distance from the hotel.

Deadline to book your room is July 11, 2024, at 11:59 PM EST.

Professional child care services (“kid camp”) will be available for children of any ability.

  • Date: Friday, August 2nd and Saturday, August 3rd.
  • Hours: 8:30 a.m. – 4:30 p.m.
  • Cost per child: $25 total covers both days (this is separate from conference registration fees)
  • Location: Sheraton Boston (indoors)
  • You must pay for kid camp when you register for the event.
  • A waiver must be signed before your child participates in kid camp. Sign the waiver now.
  • Childcare will be provided onsite and indoors.
  • Child care ratios:
    • Children with special needs – 1:2
    • Infants (0 – 2) – 1:2
    • Children (3 – 5) – 1:4
    • Children (6 – 12) – 1:6
    • Children (13-17) – 1:8

Kid camp is limited to 75 children.

Is kid camp right for your child?

Although our Kid Camp is specially designed for all children, we’ve noticed that older, neurotypical children (ages 12 and above) do not find the camp as engaging as younger children or those with cognitive challenges. Therefore, we recommend that you consider alternative arrangements to ensure every child’s experience is enjoyable and appropriate to their interests.

Services are provided by Corporate Kids Events.

Onsite Registration

Corporate Kids requires you and your child to participate in an onsite registration process prior to entering kid camp. Their safety program includes:

•use of ID bracelets
•secure sign-in and sign-out procedures
•digital photo security system (digital photos of each child with their parents or guardians)
•detailed review of each child’s dietary and medical needs

Activities

Children and teens will enjoy a full day of “kid-tested” activities that are age-appropriate, stimulating and, of course, always fun!

Friday, August 2

Kid Camp 8:30 AM – 4:30 PM

Expo and Resource Fair 9:00 AM – 5 PM

Opening Session 9:00AM – 9:45 AM

Breakout sessions 10:00 AM – 10:45 AM; 11:00 AM – 11:45 AM

Lunch 12:00 PM – 1:00 PM

Break to visit the Expo1:00 PM – 2:00 PM

Breakout sessions 2:00 PM – 2:45 PM; 3:00 PM – 3:45 PM

Last chance to visit the expo 3:45 – 4:30 PM

Dinner on your own

Bowling night – self-advocates (teens and young adults who had surgery) 7 PM – 9 PM

Saturday, August 3rd

Kid Camp 8:30 AM – 4:30 PM

Breakout sessions 9:00 AM – 9:45 AM;10:00 AM – 10:45 AM; 11:00 AM – 11:45 AM

Lunch 12:00 PM – 1:00 PM

Break 1:00 PM – 2:00 PM

Breakout sessions 2:00 PM – 2:45 PM; 3:00 PM – 3:45 PM

Dinner and Dance Party! 5:00 PM – 8 PM

The Pediatric Epilepsy Surgery Alliance encourages scientific research programs because they contribute to advances in the study of functional outcomes after epilepsy surgery. We will send you an email about research when opportunities are confirmed.

Reading After Hemispheric Surgery

Who can join:

Children (ages 6-17) who have had hemispherectomy, are metal-free, braces- free, and shunt-free

What is involved: 1:1 testing of reading and related skills (~2 hours) virtual or in-person at MIT in August 2024 (~2 hours) A brain imaging session at MIT using MRI (1.5-2 hours) during the PESA Conference (~Aug 1-4, 2024)

What researchers offer to participants: Local travel reimbursement from your Boston hotel to/from MIT (up to $50 each way) Gift cards up to $100 for participation in both sessions A report with your child’s performance on reading and related measures

How do we sign up or learn more? Email BEAMreadingBrain@gmail.com to contact the study team at MIT and the MGH Institute (study led by Dr. Joanna Christodoulou)

Are you interested in volunteering at the conference? Just check the box when you register and we’ll reach out to you with volunteer opportunities.

Here are some suggestions to make your trip less stressful:

  1. Make sure you have your current health insurance card/information in case of any medical emergencies. Review your policy regarding emergency care when traveling. Bring a hard copy of your child’s Seizure Action Plan.
  2. Place medications in your carry-on bag and make sure to bring an extra week’s worth to be safe.
  3. Pack sunscreen for time at the pool!
  4. The weather in Boston can reach the 90s in August, with humidity. Bring warm weather clothes as well as a light sweater or sweatshirt for the evenings.

Closest Airport

Boston Logan International Airport

Local Transportation

  • There is no free shuttle from the hotel to the airport
  • Uber/Lyft/Taxi available from the airport for $25 – $35.
Closest Hospital 

Our indoor exhibit hall is a great opportunity to reach and connect with all attendees of the Pediatric Epilepsy Surgery Conference. It is a primary networking area for attendees.

Exhibit Hall Dates and Hours: August 2, 2024 – 9:00 am – 5:00 pm

Set-Up:  August 2, 2024, at 7:00 am

Benefits to Exhibiting:

Exposure to 500 family members of children with disabilities from across the country. Logo on the exhibitor page of our website with link back to your webpage.

Exhibit Booth Details:

50-word company description in the final program. 6′ table with two chairs and table cloth. Price $250 per space includes lunch on August 2nd for two people. Does not include full conference registration. Contact nmurray@epilepsysurgeryalliance.org for more information.

Prior conferences have included sessions and workshops on a wide range of topics. You can view prior conference sessions our our YouTube channel here.

The Pediatric Epilepsy Surgery Alliance reserves the right to cancel all or any part of this event if there is insufficient registration or for other reasons. We are not responsible for cancellation charges assessed by the airlines, travel agencies, hotel, or other losses incurred due to the cancellation of this conference. You will be reimbursed for your ticket(s), less processing fees, in the event of cancellation.

Written cancellations, requests for refunds (less Eventbrite administrative fees), and/or changes will be accepted until seven days before the conference.

All information listed on this website is subject to change.

The Pediatric Epilepsy Surgery Alliance wishes to take steps to ensure that no individual with a disability is excluded, denied services, segregated or otherwise treated differently than other individuals due to the lack of auxiliary aids and services. If you require any of the auxiliary aids or services identified in the Americans with Disabilities Act to attend any program, contact us at info@epilepsysurgeryalliance.org.

TERMS AND CONDITIONS: Your personal data will be collected to manage your registration and participation in connection with this conference and will be shared with the Pediatric Epilepsy Surgery Alliance and those who are coordinating the logistics for the conference.

COVID19: We will implement health and safety protocols appropriate to the public health circumstances existing at the time of the Conference. The Pediatric Epilepsy Surgery Alliance will exercise reasonable efforts to utilize protocols that will comply with federal, state, and local public health laws and private business policies in effect at the time of the conference.

CODE OF CONDUCT: 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. Participation in conference events and activities carries some risk, and by attending, attendees assume responsibility for their own well-being. All attendees must follow posted instructions while participating in conference events and activities. Failure to follow all protocols in effect and required by the Pediatric Epilepsy Surgery Alliance, the venue provider, and governing authorities during the conference may result in registration cancellation without refund.

ASSUMPTION OF RISK: By registering for the conference, I hereby assume all risks associated with, resulting from, or arising in connection with, participation, in any capacity, in the conference or any conference-related activities, including, without limitation, all risks of theft, loss, harm, damage, illness or sickness (including those caused by known or unknown infectious or communicable disease such as COVID, H1N1, or other illness or sickness caused by bacteria, fungi, microorganisms or viruses), or injury to the person (including death) or property damage, whether caused by negligence, intentional act, accident, act of God, or otherwise.

WAIVER AND RELEASE: As a condition of my participation in the conference, I agree to hold harmless, defend and indemnify the Pediatric Epilepsy Surgery Alliance, its directors, officers, employees, volunteers, licensees, cooperating entities, agencies, their representatives, heirs, executors, administrators, successors and assigns (the “Protected Parties”) from any and all claims of mine, my spouse, family members, or others arising from my injury or loss due to my participation in the conference, including those arising from the inherent risks of attending the conference or the negligence of the Protected Parties to the greatest extent allowed by law. I understand that I must sign this waiver and release to complete my registration.

  • Treat one another with respect, consideration, and dignity regardless of gender, gender identity and expression, sexual orientation, marital or parental status, age, immigration status, disability, neurodiverse status, physical appearance, body size, race, ethnicity, nationality, religious affiliation, socioeconomic background, educational background, career stage, political affiliation, or military service.
  • Comments or behaviors that may reasonably be assumed to have the effect of creating, contributing to, or maintaining an environment that is hostile toward or damaging to a person or group are prohibited, no matter whether they are made directly (e.g., in person or directly online) or indirectly (e.g., via social media).

Thank you to our corporate partners for your support

Sponsors

CHAMPION

PLATINUM

GOLD

SILVER

Questions? Email us!

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