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Are you a vision teacher or orientation & mobility specialist working with students, mentoring teachers in the field, or helping teams? Do you want to learn more about students with epilepsy who have had VNS,
Recently we hosted a Power Hour on Vision After Epilepsy Surgery. Dr. Linda Lawrence, member of our scientific advisory board and a pediatric ophthalmologist who is an expert in brain-based visual impairment as well as
EXISTING PATHWAYS HELP CHILDREN PROCESS VISION LIKE THEIR TYPICAL PEERS In children with drug-resistant seizures, resective epilepsy surgery can offer a chance at seizure freedom. However,
Children after hemispherectomy, TPO disconnection, and occipital lobectomy benefit from a complete evaluation from a neuro-ophthalmologist every year. If a neuro-ophthalmologist is unavailable in your area, an ophthalmologist (MD) or optometrist (OD) with experience working
How a child sees color is a function of both the color receptors in the retina of the eye as well as specialized neurons in the occipital lobe of the brain. Color vision deficiency
The most significant visual impairment a child will have after hemispherectomy, TPO disconnection, or other surgeries which remove the occipital lobe, is loss of half of the visual field in each eye opposite the
Removing or disconnecting the occipital lobe, which occurs as part of hemispherectomy, temporo-parietal-occipital disconnection (commonly known as TPO disconnection or posterial quadrantic resection or disconnection), and occipital lobectomy, affects a child’s ability to see
Please see the below survey from investigators at UCLA interested in the effects of hemispherectomy on vision. If you would like to participate in this
Every two years, we host a very special event: a multi-day family conference and scientific meeting. This year, we gathered in Boston from August 1-3, and it was a huge success! With record-breaking attendance
Comparing Two Treatments: Medication v. Surgery for Lennox Gastaut Syndrome A research study funded by the Patient-Centered Outcomes Research Institute (PCORI) is looking at how different treatments affect children and teens with Lennox-Gastaut
Important Update on Our Symptom Surveillance After Hemispheric Surgery Initiative When my son, Henry, underwent a functional hemispherectomy at just three months old to stop seizures caused by hemimegalencephaly, I vividly remember being overwhelmed by
What about my other kids? Navigating the dynamics of sibling relationships in families of children with pediatric epilepsy When you have a child that requires constant supervision and care, how, as a parent, do you
After epilepsy surgery, the transition to adulthood can be particularly challenging. Families need to know what tools are helpful to fully understand their teen's cognitive and functional profile to design a results-oriented transition plan. How
I am excited to share some lessons learned from our time at the American Epilepsy Society earlier this month. This is one of the largest epilepsy meetings in the world, with over 6,000 attendees
The Pediatric Epilepsy Surgery Alliance (Alliance) has added four new individuals to its Board of Directors “We are thrilled to welcome these excellent additions to our Board of Directors,” said Matt Flesch, board chair of the
Moderated by Dr. George Ibrahim (The Hospital for Sick Children), this review will include: 1. Early Data from the Global Pediatric Epilepsy Surgery Registry - Outcomes Beyond Seizure Control (Monika Jones, JD, Pediatric Epilepsy Surgery
Join us for a transformative presentation where we shed light on the alarming sexual assault epidemic affecting people with disabilities. Led by passionate disability advocate Julie Payne-Neward, this session is a call to action for
Families enjoying the dance party at our family conference in 2022 Health Related Quality of Life After Pediatric Epilepsy Surgery The #1 goal of any epilepsy surgery is either to stop seizures or reduce
Join us at the beautiful French Embassy in Washington, DC! As the Pediatric Epilepsy Surgery Alliance's national signature event, the Give for Hope™ Boo Bash benefits Dreams for Danny – our surgical evaluation travel scholarship. The Problem One-third of children
The Pediatric Epilepsy Surgery Alliance (the Alliance) is the only nonprofit organization fully dedicated to the community of children who need neurosurgery to treat their seizures. We provide our community with financial aid, support
Epilepsy and Long-Term Survival The most frightening fact about epilepsy is that people with epilepsy have a higher chance of dying compared to others their age. It's one of the main reasons we want
Regardless of their disabilities, all children eventually become adults – physically and legally. Transition planning is about looking ahead at your child’s future life, setting goals, and determining what supports and services will be needed
Regardless of their disabilities, all children eventually become adults – physically and legally. Transition planning is about looking ahead at your child’s future life, setting goals, and determining what supports and services will be needed
Friday, May 12, 2023 5 pm Pacific Time | 6 pm Mountain Time | 7 pm Central Time | 8 pm Eastern Time Free admission More than 500,000 children in Canada and the USA have
Can new technology bring hope to children who have drug-resistant epilepsy? The Pediatric Epilepsy Surgery Alliance was thrilled to co-host the USA Premiere of Seizing Hope: High Tech Journeys in Pediatric Epilepsy at the 2022
The financial aspects of caring for a child or adult with special needs can be daunting. This workshop will provide you with an overview of what you need to do, including: How to address primary
When should you consider epilepsy surgery for your child's rare genetic epilepsy? Join Dr. Ahmad Marashly, Medical Director, Pediatric Epilepsy Surgery Program, Johns Hopkins Hospital, and Monika Jones, founder and Executive Director of the Pediatric Epilepsy
Can children with drug-resistant seizures caused by a rare genetic epilepsy have epilepsy surgery? New research and clinical experiences say that the answer is yes. Come hear about when and why you should consider epilepsy
How do they do it? How do other parents manage the many challenges after their child has epilepsy surgery? Do you wish you had a “blueprint” of ideas and tools others have found effective? Our
Meet other families on the pediatric epilepsy surgery journey and celebrate our community at the beautiful French Embassy in Washington, DC! This event launches our Give for Hope™ campaign to raise funds for Dreams for
