Moyamoya Disease Resources

Caring for a child with any illness or injury can be overwhelming. To help you find answers to your questions and feel confident with the care you’re providing your child, we’ve created the following list of health resources. We hope they can help make this time in your family’s life a bit easier.

Pediatric stroke can happen in infants, children and even before birth. This infographic created by the American Stroke Association offers facts about perinatal and childhood stroke.

Support and Education Groups

The AHA/ASA Support Network offers a dedicated Pediatric Stroke discussion board where you can connect with other stroke patients and their caregivers, share your stroke experiences, and give and get emotional support and encouragement.

The KISS Initiative is an online Facebook support group for families of pediatric stroke survivors. It is a public forum where parents share stories, resources and support.

The Neuro-Rehab Parent Support Group is open to parents and caregivers of children with acquired brain injury (including traumatic brain injury and stroke). The group meets the second Wednesday of every month from 7 to 8:30 p.m.

The Pediatric Stroke Parent Support Group typically meets the third Thursday of every month in the Seashore House to discuss a wide variety of topics.

The Teen Neuro-Rehab Support Group provides support to teens and young adults (ages 13-21) with acquired brain injuries (including traumatic brain injury and stroke). The group meets the second Wednesday of every month from 7 to 8:30 p.m.

Tools for Success at School

Find tips for children returning to school after a stroke and information about special education for children who have suffered a stroke.

male college student smiling

Many young adults choose to pursue a college degree after a stroke. Whether you are considering attending a local community college or attending a university away from home, here are some quick tips on how to have a successful transition to college.


Boy playing Battleship game with woman

Camp All Hands on Deck is a summer camp for children with hemiparesis, or weakness on one side of the body.

Moyamoya Disease Surgery video screen

Children with moyamoya disease require coordinated care. Treatment includes indirect bypass surgery which helps reduce the risk of stroke, as well as medical and rehabilitation treatment by stroke specialists.

Pediatric Brain Tumor video screen

Families travel from around the world to be treated by the pediatric neurosurgery team at The Children's Hospital of Philadelphia. This video series explains several neurosurgery procedures performed by pediatric neurosurgeons at CHOP and current brain tumor research.

The International Alliance for Pediatric Stroke, in partnership with the American Heart Association/American Stroke Association created a video about pediatric stroke to help raise awareness that a stroke can happen to infants, children and even before birth. The video features Rebecca Ichord, MD, pediatric neurologist and director of the Pediatric Stroke Program at CHOP.

Lori Billinghurst, MD, a pediatric neurologist at Children’s Hospital of Philadelphia, talks about signs of stroke in a child and when symptoms call for an urgent stroke evaluation. The video interview is from the International Stroke Conference 2017.


AHA is the nation’s oldest, largest voluntary organization devoted to fighting cardiovascular diseases and stroke.

The American Stroke Association is the division of the American Heart Association that's solely focused on reducing disability and death from stroke through research, education, fundraising and advocacy.

Bellaflies Foundation is dedicated to providing hope for children and families affected by pediatric strokes. The foundation raises pediatric stroke awareness. It also fundraises for pediatric stroke research and education. Their website has educational handouts related to pediatric stroke.

The Brain Injury Association of America (BIAA) is the country’s oldest and largest nationwide brain injury advocacy organization.

IAPS was established to facilitate collaboration among the many international pediatric stroke communities. The purpose is to provide a stronger, more united voice to effectively advocate for newborns, babies and children who have had a stroke.

The mission of the National Institute of Neurological Disorders and Stroke (NINDS) is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

The National Stroke Association provides information and resources to the public and health professionals with the aim of reducing the incidence and impact of stroke.

The Traumatic Brain Injury (TBI) Fund provides New Jersey residents of any age, who have survived a traumatic brain injury, the opportunity to access the brain injury related services and supports they need to live in the community.

Pediatric Stroke Warriors was founded by the mother of a child who had a stroke. Their mission is to support children and their families as they recover from a stroke. Supports include the Brave Box/Warrior Bag Program, a family toolkit brochure, and lists of national and state resources.

The World Pediatric Stroke Association (WPSA) works to raise awareness, knowledge and research about pediatric stroke. WPSA has a blog written by parents of stroke survivors and opportunities to connect with other families.