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From peer-reviewed studies to behind-the-scenes insights from our tri-city rounds, this is where BLT shares what we’re learning—and what’s next in pediatric neurovascular care.

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Moyamoya Family Education Day 2025: Growing New Branches

Updated: Aug 28

On Saturday, May 10, 2025, families, patients, and medical professionals came together for Moyamoya Family Education Day 2025, held from 9:00 a.m. to noon. The theme, “Growing New Branches – Avoiding Collateral Damage and Building New Networks of Teammates,” reflected the event’s focus on education, community support, and collaborative care.


This half-day program offered a blend of expert presentations, patient perspectives, and supportive services — designed to empower families and strengthen the Moyamoya community.


Moyamoya Family Education Day 2025 – patients, families, and experts gathered for education and support
Moyamoya Family Education Day 2025 – patients, families, and experts gathered for education and support

Opening Remarks & Patient Keynote

The day began with introductions from Dr. Edward Smith (Boston Children’s Hospital) and Dr. Darren Orbach, who welcomed attendees and set the tone for an inclusive and informative event.


The keynote address was delivered by patient speaker Carolyn Milks, who shared her personal Moyamoya journey, offering inspiration and insight to families navigating similar challenges.


Medical & Surgical Insights

  • Surgical Treatment: Dr. Edward Smith and Mr. Dulanka Silva (GOSH) outlined current surgical approaches to Moyamoya and their outcomes.

  • Medical Management: Dr. Noma Dlamini discussed strategies for managing Moyamoya medically, including supportive therapies and long-term monitoring.

  • Genetics: Dr. Sid Srivastava provided an overview of genetic factors contributing to Moyamoya, highlighting the importance of family awareness and screening.


Research & Clinical Care

  • Research Updates: Dr. Alfred See and Dr. Laura Lehman shared the latest findings from Moyamoya research, including imaging and clinical outcome studies.

  • Perioperative Care: Nurse practitioners Jen Judge and Christopher Isibor discussed perioperative care protocols, helping families understand what to expect during hospital stays.


Supportive Services for Families

Recognizing that Moyamoya care extends beyond medicine, the program also spotlighted supportive resources:

  • Social Work: Amar Bryant and Jane Wade emphasized psychosocial support for families.

  • Child Life: Laura Boegler and Alyssa Sachs demonstrated the vital role of child life specialists in helping young patients and siblings cope with hospitalization and treatment.


Group Panel & Closing

The day concluded with a group panel discussion, where families and providers engaged in open dialogue, followed by a shared lunch to encourage connection and community building.


Key Takeaways

  • Family-centered education remains essential to Moyamoya care.

  • Advances in surgery, genetics, and research are improving outcomes and understanding.

  • Supportive roles like social work and child life play a vital part in holistic patient care.

  • Events like these strengthen the networks of teammates — doctors, patients, families, and advocates — needed to face Moyamoya together.

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