PESAlliance
Information, research and programs before and after pediatric epilepsy surgery.
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⭐️ FREE COURSE - The IEP Process
⭐️ FREE COURSE - The IEP Process
Take our free IEP course. Our free, online self-paced course helps you understand everything you need to know about IEPs. Arm yourself with knowledge and be a powerful advocate for your child. This course is made possible thanks to the generous support of Amgen. TAKE THE COURSE
Connect with a Parent Support Navigator
Connect with a Parent Support Navigator
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Fundraise for us
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Sign up for our newsletter
YOUR CHILD'S JOURNEY MATTERS
Your child's journey matters. Join our patient registry today.
Your child's journey matters. Join our patient registry today.
Join the Global Pediatric Epilepsy Surgery Registry The Global Pediatric Epilepsy Surgery registry is a research project that allows families to share their experiences with and without epilepsy surgery in childhood by completing a series of surveys. The data collected will be used to answer some of the most important questions about pediatric
INFORMATION + RESOURCES
Upcoming Events + Webinars
Upcoming Events + Webinars
What Is epilepsy surgery?
What Is epilepsy surgery?
When are seizures drug-resistant?
When are seizures drug-resistant?
Drug-resistant epilepsy is defined as failure of adequate trials of two tolerated, appropriately chosen and used anti-epileptic drug schedules (whether as alone or in combination) to achieve sustained seizure freedom. What does this mean? It is very important to understand the key phrases in this definition. We review them here: "adequate trials" This means that the drug
When to ask for a surgical evaluation for your child
When to ask for a surgical evaluation for your child
Time is brain. Whether your child is a candidate for one of the many surgeries to treat seizures is important to know as soon as possible. When should I ask to have my child referred for an epilepsy surgery
Information, Guides, and Resources
Information, Guides, and Resources
The (Almost) Everything List We know you need a lot of information about how to make decisions, school, adult life, financial assistance, and family resources. That's why we've published our new (Almost) Everything List - it gives you what you need at your fingertips! It will be updated often with
Therapies and Development
Therapies and Development
Education After Pediatric Epilepsy Surgery | Facebook
Education After Pediatric Epilepsy Surgery | Facebook
Managing the toll of caregiving
Managing the toll of caregiving
About caregiving a child with drug-resistant seizures Parents of children with chronic illnesses or disabilities are at a higher risk of parenting stress. Caregiving can put a physical and emotional strain on parents, as well as healthy siblings and even extended relations like grandparents. Taking care of a child with drug-resistant epilepsy is a high risk
Learn about transition to adulthood
Learn about transition to adulthood
Everything you need to know about the transition to adulthood!
Our blog
Our blog
THE ALLIANCE IN THE MEDIA
Prime Video: Life with Half a Brain
Prime Video: Life with Half a Brain
Why These Parents Made the Agonizing Decision to Have Half Their Child's Brain Removed (Exclusive)
Why These Parents Made the Agonizing Decision to Have Half Their Child's Brain Removed (Exclusive)
Before she was born, Mora Leeb, now 16, suffered a stroke, By 4 months old she was experiencing seizures. The stroke had destroyed half her brain and her parents had to decide whether Mora should undergo a hemispherectomy. Her doctors explain why such a drastic operation was her best chance for a full life.
How the Brain Can Rewire Itself After Half of It Is Removed (Published 2019)
How the Brain Can Rewire Itself After Half of It Is Removed (Published 2019)
New scans showed how the brains of people who had a hemisphere removed in childhood continue to function.
Meet the 'glass-half-full girl' whose brain rewired after losing a hemisphere
Meet the 'glass-half-full girl' whose brain rewired after losing a hemisphere
Mora Leeb was 9 months old when surgeons removed half her brain. Now 15, she plays soccer and tells jokes. Scientists say Mora is an extreme example of a process known as brain plasticity.
HIGHLIGHTS
Epilepsy surgery improves survival in children with drug-resistant seizures
Epilepsy surgery improves survival in children with drug-resistant seizures
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 parents of children with drug-resistant epilepsy to get to the child to
MAKE AN IMPACT
DONATE
DONATE
Give a child hope by donating today Your gift helps us raise awareness about epilepsy surgery as a treatment for children with drug-resistant seizures, fund critical research, guide a parent or caregiver navigating their child's epilepsy surgery journey, or provide financial aid to get a child to a prompt surgical evaluation. Every dollar you give
YouTube Channel
YouTube Channel
PROGRAMS + FINANCIAL AID
Surgical Evaluation Travel Scholarship
Surgical Evaluation Travel Scholarship
Parent Support Navigators
Parent Support Navigators
Free School Training
Free School Training
BLOG HIGHLIGHTS
Quick Guide to Financial & Medical Resources for Families
Quick Guide to Financial & Medical Resources for Families
Epilepsy surgery improves survival in children with drug-resistant seizures
Epilepsy surgery improves survival in children with drug-resistant seizures
Caregiver Supports After Epilepsy Surgery
Caregiver Supports After Epilepsy Surgery
Study confirms intensive rehabilitation effective years after hemispherectomy
Study confirms intensive rehabilitation effective years after hemispherectomy
How do I get 1:1 support for my child at school?
How do I get 1:1 support for my child at school?
THERAPIES AND DEVELOPMENT
Hand Arm Bimanual Intensive Training
Hand Arm Bimanual Intensive Training
RESEARCH
Participate in Research
Hemispherectomy Study - Adults Who Had Hemispherectomy In Childhood
Hemispherectomy Study - Adults Who Had Hemispherectomy In Childhood
Global Pediatric Epilepsy Surgery Registry
Global Pediatric Epilepsy Surgery Registry
Completed Research
Research Library
Research Library
UPCOMING EVENTS
Family and Research Conference • Boston 2024
Family and Research Conference • Boston 2024
IN THE NEWS
Disconnecting the brain helps kids with epilepsy
Disconnecting the brain helps kids with epilepsy
Meet the 'glass-half-full girl' whose brain rewired after losing a hemisphere
Meet the 'glass-half-full girl' whose brain rewired after losing a hemisphere
How the Brain Can Rewire Itself After Half of It Is Removed (Published 2019)
How the Brain Can Rewire Itself After Half of It Is Removed (Published 2019)
GET INVOLVED
Volunteer
Volunteer
Apply to be a parent support navigator
Apply to be a parent support navigator
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Share Your Story
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