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Letter: After Brain Surgery, Set to Run New York Marathon

On November 7, I shall run the NYC Marathon; something I never dreamt of six years ago as I was preparing myself for brain surgery. While my fellow college graduates were searching for new jobs, I was researching Chiari 1 Malformation (CM).

I did not come to the decision to have brain surgery lightly. All my life, I suffered from headaches.  During my junior year in college, I had a bad fall out of my bunk-bed and slowly started experiencing additional symptoms: more intense headaches, loss of vision (had to get glasses for the first time), floating black spots, intense tingling in my hands and feet (so bad I cried in agony), dizziness, vertigo, balance issues and difficulty focusing. The moments I remember most of my graduation weekend from Providence College were my continuous episodes of vertigo and weakness.

After every diagnostic test under the sun and multiple doctor opinions, I made the decision to have brain surgery and on November 11, 2004, I had decompression brain surgery. During my recovery, I told my husband (then boyfriend), Bernard that “if I can survive brain surgery, I can run a marathon.  In 5 years, I am going to run a marathon.”  On April 28, 2009, four and a half years after surviving brain surgery, I ran my first marathon, the Country Music Marathon in Nashville, TN.  I raised $4,000 for HHT (a rare blood vessel disease my mother suffers from.

Last summer, I was asked by a board member of the American Syringomyelia & Chiari Alliance Project, Inc. (ASAP) to start up a support group on Long Island.  We currently hold monthly meetings. On November 7, I shall run the NYC for ASAP in honor of these brave men, women and children.

ASAP is a 501 c3 tax-exempt corporation, a nonprofit organization established over 20 years ago to help people like me, with Chiari Malformation (CM) and/or Syringomyelia (SM), here in our community, around the country and around the world. ASAP has been able to fund numerous studies and will continue to fund at least three additional grant/studies this year.

CM and SM are devastating conditions characterized by symptoms of headaches, extreme chronic pain, loss of motion and paralysis. Current statistics suggest that there are as many as 350,000 people in the country with CM and SM, many of them children. This estimate may be understated. However, new diagnostic techniques are making it easier to identify and diagnose new patients every day. Unfortunately, after diagnosis, patients can undergo multiple brain and spine surgeries to aid in the reduction of pain and symptoms. There is no guarantee of relief and most patients continue to suffer throughout their lives. There is no cure yet. To learn more, please go to our website

 Will you help me help those who suffer from this difficult condition ? To donate, visit or send a check made payable to ASAP to PO Box 1586, Longview, TX 75606.

Your generous donations will allow ASAP to continue to organize regional community events, fund a multi-site outcomes study, expand genetics projects and support clinical pain studies.

Kerry Chu

New Hyde Park