Tuesday, June 23, 2009

June 2009
Message from Column of Hope

To the CM/SM Community and Our Supporters:

A lot has happened since October of 2008, when our Gala successfully raised over $60,000 to advance CM/SM research.

In November 2008, the Stringers and I attended a conference with many of the world’s experts in Chiari malformation research that COH cosponsored with the National Institutes of Health, Conquer Chiari, and ASAP. The meeting was extremely gratifying for several reasons:

- The collaboration among three major organizations focused on the CM/SM community (Conquer Chiari, ASAP, and COH).

- The collaboration among so many of the world’s leading neurosurgeons and scientists focusing on CM/SM.

- The excitement in the room as the world’s experts heard Dr. Marcus Stoodley’s findings regarding the mechanisms of syrinx formation. It was so gratifying to hear the experts express sentiment like “I think he has it figured out!!!” Several of those surgeons and scientists made a special point to congratulate those of us from COH for sponsoring such ground breaking research. The link below takes you to Conquer Chiari‘s recordings of the Stoodley presentation as well as the other presentations. http://hosted.mediasite.com/mediasite/Catalog/pages/catalog.aspx?catalogId=c2c14d85-d2a9-4626-9154-0505f47db6f7

- We also received accolades for securing the well known and accomplished neurosurgeon/scientist/inventor, Dr. Lee R. Guterman as our volunteer scientific advisor to review our grants and routinely monitor their progress.

- A sense that real progress has been made in the study of why many Chiari surgeries fail.

Recently, we approved two research grants from applications we received from our joint request for proposals with Conquer Chiari. The first one is a $70,000 follow up grant to continue the Stoodley study, bringing our total funding of the research to understand the mechanism of syrinx formation to nearly $180,000. Our second award is a $10,000 grant for Dr. Misao Nishikawato to follow up on a study at The Chiari Institute on Long Island, New York, to further stratify patients to determine which surgical procedure will be most beneficial to address their particular form of Chiari malformation.

Recently, a collaboration of good friends appears to have given access to a wealth of DNA data to a national award winning genetics scientist’s patented micro array process. These scientists, Norma Nowak, PhD and Pankaj Singhal, MD are volunteering their time to see of we can advance the understanding of the relationship between the human genome and Chiari malformation.

With the recurring theme of collaboration, COH finds itself as the major funding source for what may be the study that unlocks the century old mystery of the actual cause of syringomyelia, while helping to continue what appears to be definitive research on determining proper treatment for more Chiari patients, and at the same time advance genetics research. All of this is made possible by the volunteers and supporters of COH, and the hard work and dedication of the scientists we collaborate with.

Thank you all for your continued support!

Mark S. Kane, President
Column of Hope – Chiari & Syringomyelia Research Foundation

We all hope this type of positive synergy will continue! Bravo!
AZ Syringo & Chiari Support Group

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