Moyamoya Foundation

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...

05/09/2026

Today May 9th from 10 - 12 EDT, is Boston Children's Hospital - Moyamoya Family Day 2026. You can join virtually by registering at; https://bostonchildrens.zoom.us/webinar/register/WN_qPBJEV-OQv6fPwlFVYis4A #/registration

05/07/2026

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.

05/07/2026

Yesterday was World Moyamoya Day.
Today, we keep the momentum going.

The sky is the limit when a community comes together to raise awareness, advocate for patients, support families, and advance research for Moyamoya disease.

Every conversation matters.
Every story matters.
Every voice helps move us closer to better outcomes.

05/06/2026

This World Moyamoya Day, we’re proud to amplify the voices of our Medical Advisory Board and Foundation Board members.

Their dedication, expertise, and compassion drive the work forward—bringing awareness, advancing research, and supporting every patient and family affected by moyamoya.

This is why we do this work. 💙

05/06/2026

May 6 is World Moyamoya Day.

Moyamoya disease is a rare, progressive condition where key arteries to the brain narrow, increasing the risk of stroke—often in children and young adults.

For many families, the diagnosis comes after a stroke has already happened.
That’s the reality we’re working to change.

Today, take one simple action:
Tell one new person about Moyamoya.

Share a fact. Start a conversation. Repost this message.

Because awareness can lead to earlier diagnosis, faster treatment, and better outcomes.

At the Moyamoya Foundation, we believe awareness is the first step toward better outcomes—and ultimately, a cure.

One person → one conversation → real impact.

Learn it. Share it. Pass it on.

01/02/2026

The Moyamoya Foundation wishes you a happy and healthy New Year. We are deeply grateful for your continued support of our advocacy, awareness, and research efforts, and we look forward to all we can accomplish together in the year ahead.