BENEFITING: ANGIOMA ALLIANCE
IF YOU ARE INTERESTED IN JOINING THIS RIDE FROM WHERE YOU ARE, PLEASE CREATE A PAGE BY CLICKING ON 'FUNDRAISE FOR THIS CAMPAIGN'!
Download a flyer here!
IF YOU WOULD LIKE TO MAKE A DONATION BY MAIL PLEASE MAIL TO Angioma Alliance, 161 Jefferson Dr., Palmyra, VA 22963 AND INCLUDE 'BIKING FOR BRAINS' IN THE MEMO.
On July 27, 2016, Dr. Edward Smith of Boston Children’s Hospital removed a silver dollar sized piece of my daughter Shannon’s skull, sliced through healthy brain tissue, and began to deftly remove a walnut-sized cluster of rogue blood vessels that were growing out of control, slowly bleeding, causing seizures, and threatening my daughter’s future well-being. Angiomas, also known as cavernous cerebral malformations (CCMs), affect 1 out of 500 people. They can cause a wide variety of symptoms, including seizures, impaired vision and motor function, reduced mental faculties, and more. There is no known cure other than forced removal through a “craniotomy”.
The operation was terrifying, but Shannon was strong and the doctor’s hand was true. Now one year later, the operation seems to have been a complete success. Shannon is off her anti-seizure medication, and there is no sign of regrowth of the “thing”. Many who are afflicted with CCMs are not so lucky – operations are not always possible, or the operations leave the patient permanently impaired. Many have the genetic form of the disease, which can result in multiple CCMs forming in various parts of their brains and brain stems throughout their lives. Research is needed to improve treatments and develop a cure. Communication and education are needed to raise awareness of this terrible disease, both among the general public and the medical community.
On September 16, 2017, I will ride my bicycle 112 miles from my home in Granby, CT to Boston Children’s Hospital in honor of my heroes - Shannon and Dr. Edward Smith. My purpose is to raise money and awareness for the Angioma Alliance, a non-profit organization dedicated to fighting angioma. You can help me in one of three ways: 1) donating to Angioma Alliance, 2) sharing our story with your friends, and 3) joining me as I Bike for Brains. This will not be a race. You can register to ride with me at any time, for any distance.
Yours Truly, Kent McCord