Pediatric Epilepsy Surgery Alliance

What Pediatric Epilepsy Surgery Alliance does

Pediatric Epilepsy Surgery Alliance (PESA), legally The Brain Recovery Project (EIN 45-2571898), is a 501(c)(3) nonprofit founded in 2011 by Monika Jones, JD, CNP, whose child underwent hemispherectomy for drug-resistant epilepsy caused by total hemimegalencephaly. Headquartered in Pasadena, California (969 Colorado Blvd, Suite 101), the organization operates with 1–10 employees and serves four primary constituencies: parents and caregivers of children with drug-resistant epilepsy considering or recovering from surgery; clinicians and healthcare professionals in pediatric epilepsy care; educators and school professionals supporting post-surgical learners; and adults who had epilepsy surgery as children navigating the transition to adult care. Its product portfolio includes the Parent Support Navigator Program, Dreams for Danny Surgical Evaluation Travel Scholarship (up to $1,000 per family), the Global Pediatric Epilepsy Surgery Registry (parent-reported outcomes database), the Educator Training Program, free online courses via Teachable/Advocacy University (IEPs After Epilepsy Surgery, Transition to Adulthood), webinars and on-demand YouTube content (Brain 101, Let's Talk About Epilepsy Surgery), multi-language surgical evaluation guides, and the biennial Pediatric Epilepsy Surgery Conference + Family Reunion. The underlying technology is a content-led platform comprising a WordPress website, a YouTube channel, a Keela-powered newsletter, a Teachable course catalog, an Eventbrite ticketing flow, and a recently introduced AI chatbot that answers general educational questions about pediatric epilepsy surgery based on public content without processing personal health data.

Revenue is generated through individual donations and charitable contributions (the Circle of Advocates monthly giving program, vehicle donations, memorial funds), corporate partnerships and grants (LivaNova funds the biennial Research and Family Conference; UCB funds the Rare C.A.R.E. binder), and biennial conference registration fees via Eventbrite. All core programs and resources, including Parent Support Navigator matching, educational guides, webinars, online courses, and financial aid scholarships, are free to families. The organization distributes through direct-to-consumer digital channels (website, YouTube, social), clinician referral networks, and the biennial in-person conference; it has earned Charity Navigator Four-Star and GuideStar Transparency Seal ratings and has been featured in The New York Times, People, Netflix, Amazon Prime Video, and NPR. Cumulative scale includes over $1.2 million in research funded, over $100,000 in family financial aid, 4,000+ parents supported, and 600+ educators trained.

Name

Pediatric Epilepsy Surgery Alliance

Legal name

The Brain Recovery Project

Website

https://epilepsysurgeryalliance.org

Company type

Private

Founded year

2011

Operating status

Operating

Headcount range

1–10 employees

Short description

Pediatric Epilepsy Surgery Alliance is a caregiver-led 501(c)(3) nonprofit that supports families of children undergoing neurosurgery for drug-resistant epilepsy through peer navigation, travel scholarships, a global patient registry, free educational courses, and biennial conferences.

Ownership category

akta.pro rank

Product category

Pediatric Health Support Services

NAICS

Individual and Family Services (6241), Educational Support Services (611710), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Educational Services (8200)

akta.pro primary industry

Epilepsy & Seizure Disorders (HLAKAIAB)

akta.pro secondary industries

Family Advocacy, Parent Training & Support Services (EDAJAKAK), Parent & Caregiver Training for IEP Navigation (EDAKACAJ), Autism Parent/Caregiver Education & Training (School-Linked) (EDAKAKAJ)

Keywords

• Pediatric epilepsy surgery support
• Caregiver education resources
• Patient advocacy services
• Epilepsy research funding
• Family support programs

Headquarters

HQ city

Los Angeles

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Charitable Contributions: The organization is a 501(c)(3) nonprofit corporation (Federal Tax ID# 45-2571898) funded primarily through charitable donations from individuals, families, and supporters. Donors can give through the website, monthly giving programs (Circle of Advocates), vehicle donations, and memorial funds.
2. Corporate Partnerships and Grants: The organization receives funding from corporate partners and grant-making organizations. Corporate partners support programs, the biennial family conference, and research initiatives. Examples include LivaNova's support for the PESA Research and Family Conference, and UCB's funding for the Rare C.A.R.E. binder.
3. Registration Fees (Conference): The biennial Pediatric Epilepsy Surgery Conference and Family Reunion charges registration fees for conference attendance, covering event costs and programming.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels8 records

Core offering

The Pediatric Epilepsy Surgery Alliance is a caregiver-led, science-driven 501(c)(3) nonprofit that provides free research, education, and support services for families of children who need neurosurgery to treat drug-resistant epilepsy. Its offerings span the entire surgical journey — from evaluation through recovery and transition to adulthood — including the Parent Support Navigator peer-matching program, the Dreams for Danny Travel Scholarship (up to $1,000 per family), the Global Pediatric Epilepsy Surgery Registry (parent-reported outcomes), the Educator Training Program, the biennial Family Conference, free online courses (IEPs After Epilepsy Surgery, Transition to Adulthood), plain-language surgical guides, and mental health and caregiver support resources. All core services are provided free of charge to families.

Product overview

Pediatric Epilepsy Surgery Alliance is a caregiver-led, science-driven nonprofit organization that enhances the lives of children needing neurosurgery to treat medication-resistant epilepsy through research, support services, and impactful programs before and after surgery. The organization offers a portfolio of interconnected services including the Parent Support Navigator Program (peer-to-parent support connecting experienced parents with families beginning their journey), the Dreams for Danny Travel Scholarship (financial aid up to $1,000 for surgical evaluation travel), the Global Pediatric Epilepsy Surgery Registry (parent-reported outcomes database), Educator Training Program (free school training and toolkits), webinars and free online courses on topics from hospital stays to transition to adulthood, comprehensive surgical guides covering all types of epilepsy surgery, mental health support resources, and biennial family conferences. The organization has funded over $1.2 million in research, supported 4,000+ parents, trained 600+ educators, and awarded over $100,000 in financial aid.

Differentiator

Problem solved

Functional benefit

Products and services

• Parent Support Navigator Program Peer-to-peer support program that matches families beginning the pediatric epilepsy surgery journey with trained, experienced parent volunteers who have lived through the surgery themselves, providing one-on-one guidance throughout evaluation, surgery, recovery, and transition. Multi-lingual support available.
• Dreams for Danny Surgical Evaluation Travel Scholarship Financial aid program providing up to $1,000 to families in need to help cover travel costs to reach pediatric epilepsy surgical evaluation appointments, addressing a key barrier to accessing surgical care. Over $100,000 has been awarded to families in need.
• Global Pediatric Epilepsy Surgery Registry Parent-reported patient registry collecting data to understand the developmental trajectory after pediatric epilepsy surgery; the only parent-reported data collection in this field, supporting outcomes research.
• Educator Training Program Free online self-paced course and toolkits for general and special education teachers, school administrators, and related service providers to support school re-entry, 504 accommodations, and IEP planning after pediatric epilepsy surgery. Has trained over 600 educators.
• Transition to Adulthood Course Self-paced companion course on the Advocacy University platform covering education transition plans, transition to adult healthcare, future planning, decision-making, and financial support with over ten hours of training modules for families and young adults.
• IEPs After Epilepsy Surgery (Free Online Course) Free self-paced online course on the Advocacy University platform guiding parents through the IEP (Individualized Education Program) process for children returning to school after pediatric epilepsy surgery.
• Pediatric Epilepsy Surgery Conference + Family Reunion Biennial multi-day conference combining scientific and clinical sessions for researchers and clinicians with educational programming and family reunion activities for parents, caregivers, children, and adults who had surgery in childhood. Registration fees apply, with subsidies for participation. The 2024 conference was held in Boston with record-breaking attendance; the 2026 conference is planned for Round Rock, TX.
• Surgical Evaluation Guides and Resources Comprehensive plain-language guides covering types of epilepsy surgery (laser ablation, lesionectomy, lobectomy, hemispherectomy, corpus callosotomy, vagus nerve stimulation, responsive neurostimulation, deep brain stimulation, multiple subpial transection), the surgical evaluation process, finding an experienced pediatric epilepsy surgeon, and questions to ask the surgeon. Available in English and Spanish.
• Mental Health Support Resources Resources and guides addressing mental health support for families, including coping with medical trauma, caregiver stress, sibling support, and trauma-informed care approaches during the pediatric epilepsy surgery journey.
• Pediatric Epilepsy Surgery Resource Hub LinkedIn-based resource hub for clinicians and healthcare professionals to share practical resources and ideas, including periodic virtual Resource Rounds sessions for social workers, coordinators, nurses, and other team members.
• Webinars and On-Demand Video Library On-demand educational video library including the Brain 101 series, Let's Talk About Epilepsy Surgery series, family conference session recordings, and webinars on topics from hospital stays to medical trauma to transition to adulthood, distributed via YouTube and the alliance website.

Quantifiable outcome

• Over $1.2 million in research funded to understand and improve outcomes after pediatric epilepsy surgery
• +3 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration14 records

Feature1 record

Partnerships

17 partnerships are on record, tiered core and supporting.

• Child Neurology FoundationcoreStrategic or Co-development PartnerThe Child Neurology Foundation (CNF) partners with the alliance on genetic testing initiatives, hosting annual half-day summits on genetic testing in epilepsy. CNF also partners on the Rare C.A.R.E. binder initiative. The alliance participates in CNF's Infantile Spasms Action Network.
• LivaNovasupportingGTM or Marketing PartnerLivaNova is a corporate supporter of the PESA Research and Family Conference. LivaNova's support enables the organization to provide the biennial conference where families, experts, and advocates come together to learn and build community.
• UCB (Pharmaceutical company)supportingGTM or Marketing PartnerUCB provided funding to make the Rare C.A.R.E. binder possible. The binder is a comprehensive organizational tool for families to manage medical records, IEPs, guardianship paperwork, benefit applications, and renewal deadlines.
• Angelman Syndrome FoundationsupportingStrategic or Co-development PartnerCo-hosts webinars and educational content with the alliance. Jointly hosted a Transition to Adulthood webinar walking families through the Life Stage Checklist.
• DEEP (DEE-P Connections)supportingStrategic or Co-development PartnerPartner organization in the epilepsy community. Collaborates on webinars and educational content including the joint Transition to Adulthood Life Stage Checklist webinar.
• Rare Epilepsy NetworkcoreStrategic or Co-development PartnerThe alliance is an active member of the Rare Epilepsy Network, collaborating with other rare epilepsy advocacy organizations to advance research and support for families.
• Infantile Spasms Action NetworkcoreStrategic or Co-development PartnerThe alliance is an active member of the Infantile Spasms Action Network, working with other organizations to improve awareness and care for infantile spasms.
• Neurology Social Services Network (NSSN)supportingStrategic or Co-development PartnerPartner organization providing social services resources to the epilepsy community. Listed as a community partner on the alliance's website.
• Pediatric Epilepsy Research Consortium (PERC)coreStrategic or Co-development PartnerThe alliance's founder, Monika Jones, serves on PERC's Research Committee, enabling collaboration between the patient community and clinical researchers.
• International League Against Epilepsy (ILAE) Neurobiology CommissioncoreStrategic or Co-development PartnerMonika Jones serves on the ILAE Neurobiology Commission's Research Advocacy Task Force, representing the patient voice in international epilepsy research planning.
• Advocacy CollaborationsupportingStrategic or Co-development PartnerListed as a partner organization collaborating with the alliance to serve the entire epilepsy community.
• Early Learning Center (ELC)supportingStrategic or Co-development PartnerPartner organization collaborating with the alliance as part of the epilepsy community network.
• Parent-to-Parent (P2P)supportingStrategic or Co-development PartnerPartner organization in the alliance's epilepsy community network.
• REN (Rare Epilepsy Network partner)supportingStrategic or Co-development PartnerPartner organization collaborating with the alliance as part of the epilepsy community network.
• Lennox Gastaut FoundationsupportingStrategic or Co-development PartnerThe Lennox Gastaut Foundation is represented by parent board members who contribute to alliance educational content on transition and caregiver support.
• CASK Gene FoundationsupportingStrategic or Co-development PartnerThe CASK Gene Foundation's Founder & CEO contributes to alliance educational content on transition planning for families.
• American Epilepsy SocietycoreStrategic or Co-development PartnerThe alliance attends the annual American Epilepsy Society meeting, participating in sessions and summits. Endorsed new practice guidelines recommending genetic testing for everyone with epilepsy.

Scale indicators6 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Child Neurology Foundation: Pediatric neurology-focused nonprofit partnering with PESA on genetic testing summits and the Rare C.A.R.E. binder. Operates in the same caregiver/clinician support space for children with neurological conditions, including epilepsy.
• DEE-P Connections: Community organization supporting families affected by Developmental and Epileptic Encephalopathies. Directly comparable as a partner organization serving the same high-acuity pediatric epilepsy population with educational content and webinars.

Broad incumbents

• Epilepsy Foundation: Largest US epilepsy advocacy organization, providing broad epilepsy education, research funding, and family support. Comparable as the dominant nonprofit in the same disease category but serving all epilepsy types, not specifically surgical pediatric cases.
• International League Against Epilepsy (ILAE): Global professional organization setting epilepsy treatment standards, on whose Neurobiology Commission PESA's founder serves. Comparable as a peer ecosystem participant shaping pediatric epilepsy research, policy, and clinical practice worldwide.
• American Epilepsy Society: Professional society of clinicians and researchers in epilepsy where PESA attends and participates. Comparable as a peer in the pediatric epilepsy ecosystem influencing research priorities, guidelines, and clinician education.
• CURE Epilepsy: Research-focused epilepsy nonprofit funding scientific investigations across epilepsy types. Comparable as a peer funding epilepsy research and serving affected families, but with a research-first rather than caregiver-support orientation.

Emerging players

• Tuberous Sclerosis Alliance: Disease-specific nonprofit for tuberous sclerosis complex, a leading cause of drug-resistant pediatric epilepsy. Comparable in serving surgical-candidate families and overlapping in pediatric epilepsy surgery messaging and research priorities.
• Hope for Hypothalamic Hamartomas: Ultra-niche advocacy nonprofit for hypothalamic hamartoma, a pediatric epilepsy condition often treated with surgery. Comparable as a peer organization built by parents of surgically treated children to support a specific pediatric epilepsy surgical population.
• Angelman Syndrome Foundation: Disease-specific pediatric advocacy organization that co-hosts transition webinars with PESA. Comparable as a peer serving families of children with rare neurodevelopmental conditions where epilepsy surgery is often relevant, and overlapping in audience and content.
• Lennox-Gastaut Syndrome Foundation: Syndrome-specific epilepsy advocacy organization. Directly comparable as a condition-specific pediatric epilepsy nonprofit where many affected children are surgical candidates, and an active PESA community/network partner.

Market position

Strengths4 records

Weaknesses1 record

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xtwitter.com/PESAlliance
• YouTubeyoutube.com/@PESAlliance
• Facebookfacebook.com/PESAlliance
• LinkedInlinkedin.com/company/pediatric-epilepsy-surgery-alliance
• Instagraminstagram.com/pedsepilepsysurgeryalliance

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Pediatric Epilepsy Surgery Alliance