May 9, 2017

June 1st, 2017

Per Dr. Edward Smith, lead research doctor for pediatric Moyamoya at Boston Children’s Hospital (“BCH”):

Dear Doo family,

I am heading to pick my daughter up this weekend, so I am afraid I will not be able to make the trail run.  I wanted to say thank you for the hard work – and congratulations!  Independent of the incredible support that you folks have provided for Moyamoya research, I hope you know how often I cite Justin as a model to aspire to for our patients and their families.  Seeing a young man like him, who has come through the surgery and done so well – heading off to college and also presenting as such a kind, polite, socially responsible individual – really inspires people.  I am very grateful for all of your efforts and I hope you know what a difference you are making – the research you have funded has reduced intraoperative stroke rates by more than 40% and our recent publication in Stroke shows that the work is making a real difference!
Thank you again – and good luck this weekend!
Ed Smith
The link below is a graphic showing the impact that your work has made on improving the lives of kids with Moyamoya – great numbers!

Moyamoya outcomes 2017

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September 6, 2016

June 1st, 2017

Per Dr. Edward Smith, lead research doctor for pediatric Moyamoya at Boston Children’s Hospital (“BCH”):

It was great to see everyone today.  Once again, thank you.  There is a little girl from Israel that I operated on last week that was treated with a method we discovered based on research you folks specifically funded.  Because of you, she is now walking around Boston doing well.  The family is grateful to me – but I told them that it was Justin’s work that funded the research that led to her treatment.

Please let him know that there is a little girl alive today because of his work.



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As of May 5, 2016

June 1st, 2017

Per Dr. Edward Smith, lead research doctor for pediatric Moyamoya at Boston Children’s Hospital (“BCH”):
BCH was ranked, once again, as the top children’s hospital in the country for neurology and neurosurgery. The development of inexpensive, noninvasive screening tests will revolutionize care for children affected by cerebrovascular disaeses, such as Moyamoya. Over the past few years, Dr Smith and his team at BCH have identified proteins in urine that signal the presence of multiple conditions, including Moyamoya. Dr. Smith’s focus has expanded recently to translating his biomarker discoveries into novel therapeutics to treat these conditons.

In addition, Dr. Smith and Dr. Darren Orbach continue groundbreaking Moyamoya research. In year one of their multiyear project, they determined that a special series of x-rays can help physicians assess both who is a good candidate for surgery and how well a patient is likely to respond to the operation. This past year, Dr. Smith, coupled x-ray images with the Moyamoya urninary biomarkers signature and demonstrated that together the tests are even more predictive of one-year surgical outcomes. These initial results will need to be validated in a larger, multicenter study, but already the findings alert clinicians to which patients will need closest monitoring and are more likely to need additional surgery. The combination x-ray/biomarker results also make it possible for clinicians to counsel families on what may lie ahed. Dr. Smith now seeks to convert the biomarker that serves as a diagnostic/prognostic tool into a molecule that can be used therapeutically. He is evaluating the molecule’s effect in animal models. The goal is to predict who might need additional treatments or interventions so that each patient’s care can be uniquely tailored to his or her pattern of disease.

At BCH, clinicians constantly seek ways to improve patient care. But until recently, no matter how sophisticated imagining technology became, some surgical decision had to wait until the child was on the operating room table. Not any more now that three dimentional printing is available. Using an MRI or CT scan, an exact replica of a child’s brain can be printed in less than 24 hours. Dr. Smith uses the 3D model to develop and practice a surgical approach that is specifically tailored to each patient – before entering the operating room. Preliminary results indicate that practicing on 3D brain models prior to surgery reduces time spent in the operating room by more that 10%, is associated with lower rates of complications, and markedly enhances the educational experience for young physicians in training.

Lastly, the only way to dramatically advance treatment of rare conditions like Moyamoya is through multi-institutional collaborations. Dr. Smith and his colleagues are committed to collaborating with academic medical institutions worldwide to further research, and to promote the exchange of knowledge and best practices on an international level.

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I hope and pray that you help many children with this disease. -- Charlie from Phillipines whose niece died from Moyamoya in 2011