Run 4 Cole
TEAM RUN 4 COLE Needs Your Support!
On January 26, 2020 - "RUN 4 COLE” will be participating in the “Publix Fort Lauderdale A1A Half Marathon” to raise funds for Dr. Anne Comi’s research at The Hunter-Nelson Sturge-Weber Center at Kennedy Krieger Institute and in honor of our son Cole Clark.
Our whirlwind journey began when Cole had his first seizure. At less than a year of age, Cole’s seizures sent him to more specialists, more hospitals, blood draws, ER visits and subjected him to more procedures than most people see in a lifetime and he has faced it all with a smile. At first this disorder turned our lives upside down, it is overwhelming to deal with something like Sturge-Weber that so little is known about. We read all the information we could, we sought out doctors and information from all over the country. Cole was put on medication, but his seizures continued at the rate of 1 or 2 episodes per month.
Early on we found that Dr. Anne Comi ran a Center for the study of Sturge-Weber, we reached out to her to do a review of Cole’s medical files. Shortly after, in May of 2013 Dr. Comi and her team discovered the genetic mutation that causes Sturge-Weber Syndrome. We could not believe this news, but we knew immediately that we needed to go see Dr. Comi sooner rather than later.
Since August 2013, Cole has been traveling to the Kennedy Krieger Institute in Baltimore, MD for annual checkup's with Dr. Comi. As a result of these visits, Cole’s seizures are under more control and Dr. Comi continues to monitor Cole’s progress and adjusts his medications as needed. Dr. Comi’s office is a thousand miles away, but her expertise and her accessibility have made this Syndrome manageable. She is the anchor that we rely on for the health of our son, and we feel that he has done amazingly well under her care.
Discovering the cause is only the beginning and we know that the path to a cure is a long road. We believe that Dr. Comi’s research will lead to improved treatments, a better quality of life, and ultimately a cure. Like many families with SWS kids, we are urgently trying to help The Hunter-Nelson Sturge-Weber Center at Kennedy Krieger Institute raise funds to proceed with the necessary research & clinical trials.
To donate, please click on the DONATE NOW button to support Sturge-Weber Syndrome research.
From the bottom of our hearts, the Clark family thanks you for helping support SWS research!
About Sturge-Weber Syndrome:
Sturge-Weber Syndrome (SWS) is the association of a facial port-wine stain with abnormal vessels on the surface of the brain (leptomeningeal angioma), glaucoma or both. Some people have an isolated intracranial variant, meaning abnormal brain blood vessels with no skin or eye symptoms. SWS does NOT generally run in families. It can affect one side (in about 85 percent) or both sides of the body (in about 15 percent). Treatments are available for many of the complications of the disease. More research is needed to develop better treatments for SWS, how to treat it, and how to prevent the medical and developmental problems resulting from it.
For more information on this discovery, visit www.kennedykrieger.org