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MOYAMOYA - A RARE PROGRESSIVE DISEASE

MOYAMOYA - A RARE PROGRESSIVE DISEASEMOYAMOYA - A RARE PROGRESSIVE DISEASEMOYAMOYA - A RARE PROGRESSIVE DISEASE

In which the main arteries supplying the brain with blood narrow and collateral vessels called “moyamoya vessels” develop.

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MOYAMOYA - A RARE PROGRESSIVE DISEASE

MOYAMOYA - A RARE PROGRESSIVE DISEASEMOYAMOYA - A RARE PROGRESSIVE DISEASEMOYAMOYA - A RARE PROGRESSIVE DISEASE

In which the main arteries supplying the brain with blood narrow and collateral vessels called “moyamoya vessels” develop.

Learn More
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FOR MORE INFORMATION ABOUT THE Global moyamoya PATIENT REGISTRY and how to enroll on CoRDS... CLICK

FOR MORE INFORMATION ABOUT THE Global moyamoya PATIENT REGISTRY and how to enroll on CoRDS... CLICK

FOR MORE INFORMATION ABOUT THE Global moyamoya PATIENT REGISTRY and how to enroll on CoRDS... CLICK

FOR MORE INFORMATION ABOUT THE Global moyamoya PATIENT REGISTRY and how to enroll on CoRDS... CLICK

FOR MORE INFORMATION ABOUT THE Global moyamoya PATIENT REGISTRY and how to enroll on CoRDS... CLICK

FOR MORE INFORMATION ABOUT THE Global moyamoya PATIENT REGISTRY and how to enroll on CoRDS... CLICK

Updated: 12-22-2024

The Moyamoya Foundation has partnered with Sanford Research to host our patient registry through the CoRDS Rare Disease Registry. This robust and secure platform ensures the safe collection and management of data, enabling seamless sharing with researchers. Through this collaboration, we aim to advance research and improve outcomes for Moyamoya patients.

Enroll Today

Used the link below to enroll and complete the CoRDS patient registry questionnaire online.

Create cords profile Click Here
Global moyamoya patient registry - FAQs

MOYAMOYA FOUNDATION CO.

We are a qualified 501(c)(3) charitable non-profit foundation - Founded 2018

Our focus is on moyamoya disease which is a rare progressive disease in which the main arteries supplying the brain with blood (the internal carotid arteries and intracranial branches) narrow and collateral vessels called “moyamoya vessels” develop. Moyamoya patients are at increased risk for stroke.

Mission and Purpose

AWARENESS, RESEARCH, AND ASSISTANCE

  • Promote awareness of moyamoya disease by working with healthcare professionals and patient advocates
  • Support and encourage research of moyamoya disease
  • Provide assistance to families/patients undergoing moyamoya treatment for expenses not covered by insurance

Our Team

We are a fully volunteer organization consisting of many moyamoya patients, caregivers, and others with personal connections to moyamoya disease.  We are managed by a seven-member Board of Directors. You can learn more about our board, on our Board of Directors page.


*** Foundation members & directors do not take a salary ***

Faces of Moyamoya Disease motivational book
The Moyamoya Foundation is inspired by these brave Warriors

Faces of moyamoya disease

A resource for Moyamoya patients and their families that shares the personal experiences of Moyamoya patients. This motivational book helps those diagnosed with this rare disease recognize that there is hope and that they are not alone.

Click to view - faces of moyamoya disease

"MOYAMOYA Disease" IN THE NEWS

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may 10, 2024 - FACEBOOK LIVE SEMINAR Recording

Watch the May 10, 2024 Facebook Live Seminar featuring nine moyamoya experts


Video Replay Timeline Markers

Moderator Introduction:

  • 00:00:00s Catherine Stratton - Vice President & Research Chairperson
  • 00:01:19s Sophia Kocher - Moyamoya Foundation Director
  • 00:01:54s Lisa Deck - Moyamoya Foundation Director

Presenters:

  • 00:04:10s Mr. Dulanka Silva, MA, MPHIL, FRCS - Great Ormond Street Hospital for Children
  • 00:26:15s Dr. Liza Pulcine, MD, MSC - The Hospital for Sick Children
  • 00:50:46s Mr. Greg James, MBBS, PHD, FRCS - Great Ormond Street Hospital for Children
  • 01:09:28s Dr. Laura Lehman, MD, MPH - Boston Children's Hospital
  • 01:22:00s Acknowledgement of Dr. Edward Smith, MD, MBA - Boston Children's Hospital 
  • 01:24:05s Dr. Christopher S. Ogilvy, MD - Beth Israel Deaconess Medical Center
  • 01:46:22s Dr. Timothy Lukovits, MD - Dartmouth Health
  • 02:03:04s Dr. Alfred See, MD - Boston Children's Hospital 
  • 02:25:22s Dr. Peter Dirks, MD, PHD, FRCSC - The Hospital for Sick Children 

Catherine Stratton Wrap-Up:

  • 02:47:43s Thank You to presenters
  • 02:48:24s Acknowledgement of Credit Unions Kids & International Pediatric Stroke Organization 
  • 02:49:15a Audience Acknowledgement
  • 02:50:10s Donation Page Link

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Moyamoya Foundation Co is a qualified 501(c)(3) charitable non-profit foundation.

  

Disclaimer: "We are not medical professionals, and this website is not intended to provide medical advice. Its content is for informational purposes only. Always consult with your physician or other qualified healthcare professional regarding any medical concerns or conditions, and refrain from making medical decisions solely based on information obtained from this website.". 


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