Moyamoya Foundation

08/15/2026

Connect & Learn - Neurovascular Family Education Day on Moyamoya at the Hospital for Sick Children - Saturday, Sept 19 from 9:00am - 2:00pm.

Please note: You can attend IN-PERSON or ONLINE (for those who cannot attend in-person).

UPDATE: Register for In-person or Online/Virtual attendance: https://sickkids.cventevents.com/event/Moyamoya/summary or Scan the QRCode

08/03/2026

Researchers at The University Medical Center Utrecht in Utrecht, Netherlands are asking moyamoya community members to complete a short survey to understand the experiences of people with moyamoya and ask which questions future research should prioritize. Responses are anonymous. They may be summarized for a grant application, but they will not be used for formal scientific analysis or reported in a publication.
 
https://docs.google.com/forms/d/e/1FAIpQLSeZGJRQn1_s6nj-7NOD-w_ppABBYEzvMWWsqNETa9GQT20pOQ/viewform
 
Submissions will be accepted until August 31, 2026.

08/03/2026

Researchers at The University Medical Center Utrecht in Utrecht, Netherlands are asking moyamoya community members to complete a short survey to understand the experiences of people with moyamoya and ask which questions future research should prioritize. Responses are anonymous. They may be summarized for a grant application, but they will not be used for formal scientific analysis or reported in a publication.

https://docs.google.com/forms/d/e/1FAIpQLSeZGJRQn1_s6nj-7NOD-w_ppABBYEzvMWWsqNETa9GQT20pOQ/viewform

Submissions will be accepted until August 31, 2026.

Why are we asking these questions? This short questionnaire is intended to help shape a grant proposal. It will not be used as an outcome measure during the research project. We want to understand both what people experience and which questions future research should address. Responses may be summar...

07/22/2026

Today is .

Despite the tremendous strides made toward understanding the brain, there is so much for to learn. The World Federation of Neurology estimates that more than 3.4 billion people live with a neurological condition globally, the leading cause of disability worldwide. At the Moyamoya Foundation, we stand with individuals and families affected by moyamoya disease and reaffirm our commitment to advancing awareness, education, research, and support.



Learn more about World Brain Day: https://lnkd.in/eSAwfWtu

07/15/2026

Families in Ontario: Graduate students at the University of Toronto are conducting research to understand the transition from hospital to community care for children who have experienced a stroke in Ontario. If you are interested in learning more about this research or sharing your experience with pediatric stroke, please contact [email protected] to learn more.

07/10/2026

SAVE THE DATE - Neurovascular Family Education Day on Moyamoya at the Hospital for Sick Children - Saturday, Sept 19 from 9:00am - 2:00pm

Register for in-person or virtual attendance: https://sickkids.cventevents.com/event/Moyamoya/summary or Scan the QRCode

06/28/2026

The registry continues to grow! We invite all patients and caregivers to join today and help expand this critical resource supporting moyamoya research.

You can enroll today using this link: https://cords.sanfordresearch.org/activation-form

You can find step-by-step enrollment instructions on our website: https://bit.ly/3DtQoKk

Thank you for joining the GMPR! Your participation makes a difference. If you’ve started your registration but haven’t completed it yet, we encourage you to return and finalize it. Every completed registration makes the Global Moyamoya Patient Registry stronger and helps advance moyamoya research.

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05/28/2026

Please take a moment to complete this survey and support researchers as they advance to the next phase of their study.

The survey can be accessed by coping and pasting in to a web browser: https://duke.qualtrics.com/jfe/form/SV_bpATiJod5lr9wTY.

05/15/2026

Don’t forget to register for the upcoming Pediatric Stroke and Brain Injury Education seminar, “Living with Moyamoya Disease.” The Moyamoya Foundation is excited to participate and looks forward to seeing you there.

In honor of May being Pediatric Stroke Awareness Month, join us for this webinar.

Living with Moyamoya Disease

Register for link to attend:
https://us02web.zoom.us/meeting/register/LLu6An4IQQyqYtw7-dJe4w

We will begin with a clear, accessible overview of Moyamoya disease, followed by a panel of individuals with lived experience—including members of the Moyamoya Foundation—who will share diverse perspectives. Discussion topics include navigating a prolonged diagnostic journey, transitioning from pediatric to adult care, and parenting a young child with the disease. The session will include dedicated time for audience questions and discussion.

Sophia Kocher is a Moyamoya patient and board member of the Moyamoya Foundation, where she serves as Director of Patient Grants and contributes to research initiatives. Drawing from her own experience, she is deeply committed to patient advocacy and expanding support for others affected by the disease. In addition to her advocacy work, she is a medical student at Duke University in North Carolina.

Lisa Goodlin is the devoted mother of Priya, a vibrant 7 year old who was diagnosed with Moyamoya disease at 6 months old. Inspired by her daughter’s journey, Lisa became a passionate advocate and member of the Moyamoya Foundation. She works as an investigator with the Office of Healthy Aging for the State of Rhode Island, volunteers with Women United to support children’s literacy, and serves as President of the Family Association at the International Charter School, where she helps strengthen family engagement and school community.

Dean Houle has served as the Board President of the Moyamoya Foundation since 2020, shortly after its founding. His daughter Samantha is a Moyamoya patient and was diagnosed at age 19 while off at college after surviving a stroke. Prior to diagnosis she had lived a very active life doing competitive dancing. Since having surgery to improve the blood flow to her brain in 2014 and again in 2017, she has been doing very well. In 2023, she got married and in 2024 she had a son. Thankfully, she has been stroke-free since 2017.

05/13/2026

If you missed the Boston Children’s Hospital - Virtual Moyamoya Family Day event, you can watch the replay using this link.

The Cerebrovascular Surgery and Interventions Center at Boston Children’s Hospital hosted our 2026 Moyamoya Family Day. Watch the recording of this empowerin...