Organizations

We thank the organizations listed below for helping extend our reach worldwide. If you would like to suggest an organization to be included in this list, please contact us.

American Stroke Association, a division of the American Heart Association (ASA, AHA)
USA, all states
The ASA has a specific page of information for Stroke in Children
Raise awareness: connect with an AHA rep in your area; join a Heart Walk team (or form your own team); join You’re the Cure

Asociación de Hemiparesia Infantil “Hemiweb”
Barcelona, Spain
Offers support, hope, and shares information and guidance to the resources that can be useful for families of children with hemiplegia.

Association Hemiparesie
Bourgogne, France
Improve the daily life of children with hemiplegia, through play and sports activities, exchanges, and support.

AVM Alliance
Online support
A non-profit organization dedicated to filling the needs of the arteriovenous malformation (AVM) community. Their goal is to help parents whose child receives a brain AVM, aneurysm, stroke, brain vessel disease or (TBI) traumatic brain injury diagnosis. They provide valuable support, information, and resources to help families on their journey through their podcasts and private Facebook group. AVM Alliance also offers a One-on-One Parent Support Network by contacting info@avmalliance.org or filling out an online form.

Bellaflies Foundation
USA, Arkansas and Illinois
The foundation raises awareness, funds research and education, and provides support to local children’s hospitals for pediatric stroke.

Calgary Pediatric Stroke Program (CPSP), Pediatric Stroke Peer Group
Calgary, Alberta, Canada
This group serves the youth of Calgary and Southern Alberta between 10 – 17 years of age who have experienced a perinatal or childhood stroke.

Calgary Pediatric Stroke Program (CPSP), Perinatal Stroke Parent Support Group
Calgary, Alberta, Canada
Social support, educational information, and community resources for parents with a child who has suffered a perinatal stroke.

Child Neurology Foundation, Family Support and Empowerment Program, (FSEP)
Online support
Connect with Peer Support Specialists who will listen and help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition.
The CNF Childhood Stroke and Perinatal Stroke pages are perfect as a starting point for finding information, resources and clinical trials.

Children’s Stroke Program at the Hospital for Sick Children
Toronto, Ontario, Canada
The Children’s Stroke Program provides care in the hospital and throughout patient clinics for patients with stroke and their families. They host a Family Stroke Day every 2 years to give families followed by their program a chance to meet, learn about new research, and ask questions of the experts.

Colorado Pediatric Stroke: Parent Support Group (CPSPSG)
Denver, Colorado area and surrounding areas
Local monthly support group meetings and other events. Group provides proactive involvement with the community to advocate and educate about the signs, symptoms and effects of pediatric stroke.

Fight the Stroke
Milan, Italy
Shares knowledge, raises awareness and advances research for pediatric stroke.

Heart and Stroke Foundation; Foundation des maladies du Coeur et de l’AVC
Canada
Heart and Stroke Foundation is a charity promoting healthy living, advocating for eliminating heart disease and stroke and the advancement of research. Affiliated with many hospitals throughout Canada and with Canadian Stroke Best Practice.

HemiHelp
United Kingdom
For children and young people with hemiplegia and their families. Information, local support groups, conferences, events, and an online forum.

International Pediatric Stroke Organization (IPSO)
Health Professional Organization/Worldwide
IPSO is a non-profit organization, bringing together health professionals, scientists, and patient advocates who care about stroke and other cerebrovascular diseases in childhood. They collaborate to advance knowledge on mechanisms of childhood stroke and stroke recovery with an eye towards preventing stroke and improving outcomes. A new community website launched in May 2023, which houses IPSO Kid Stroke Connections, an online news periodical. IPSO Kid Stroke Connections shares a wide variety of information ranging from patient and family resources to research opportunities.

KISS Pediatric Stroke Facebook group
Online support
Facebook community for parents and families of children who have had a pediatric stroke, as well as young adults who had a stroke as a baby or child. It is a safe, welcoming group that is closed to the public to protect the privacy of the members.

Laney Jaymes Foundation
Maryland
Founded in 2017, the Laney Jaymes Foundation for Pediatric Stroke (LJFPS) was formed in honor of Lelaina Jaymes “Laney” Fitzsimons, who passed away on March 27, 2017. LJFPS is dedicated to expanding awareness of pediatric stroke as well as raising funds for the prevention and treatment of vascular diseases that cause pediatric stroke. Laney Jaymes Foundation Facebook group.

Little Stroke Warriors
Online support, Australia
Facebook community whose mission is to provide support and resources to parents, carers and educators (plus other interested parties) of children who are battling the effects of paediatric stroke. They are affiliated with the Stroke Foundation (Australia), Cerebral Palsy Alliance, Royal Children’s Hospital, Dr. Mark Mackay and Victorian Paediatric Rehabilitation Service. Please see the Stroke Foundation’s Childhood Stroke page for more information and resources.

MoyaMoya Foundation
Online
The MoyaMoya Foundation’s mission is to promote awareness of moyamoya disease by working with healthcare professionals and patient advocates, to support and encourage research of moyamoya disease, and to provide assistance to families/patients undergoing moyamoya treatment for expenses not covered by insurance.

Pediatric Epilepsy Surgery Alliance (PESA)
Online
Formerly known as The Brain Recovery Project, PESA enhances the lives of children who need neurosurgery to treat medication-resistant epilepsy by empowering their families with research, support services, and impactful programs across the lifespan. They are a powerful alliance of families, clinicians, educators, and researchers moving mountains for children who need neurosurgery to treat their seizures.

Pediatric Stroke Parent Support Group
Philadelphia, Pennsylvania
The Pediatric Stroke Program at Children’s Hospital of Philadelphia (CHOP) offers pediatric stroke awareness through their extensive family support program. They provide a multidisciplinary team approach in a hospital setting. The pediatric stroke program includes community outreach, meetings/conferences, assistance with the child’s education plan and quarterly newsletters.

Teen Neuro-Rehab Support Group
Philadelphia, Pennsylvania
This group through the Children’s Hospital of Philadelphia (CHOP) provides support to teens and young adults (ages 13-21) with acquired brain injuries (including traumatic brain injury and stroke).

The Stroke Association, Childhood Stroke landing page
United Kingdom
Provides family support and events, guidelines, toolkits, and multiple resources.

The Stroke Foundation, Childhood Stroke landing page
Australia
Learn about childhood stroke, read stories, find support & connect with others.