Brain tumor survivors walk for a cure Contributed Photos Email This Article Celebration of Hope planned for Oct. 5 BY KEN ODOR They have had seizures and chemotherapy, and face uncertain futures, but Richmond area brain tumor survivors are ready to walk in the fourth annual Celebration of Hope 3K walk Oct. 5 at Innsbrook. The walk is sponsored by B.R.A.I.N. (Brain Tumor Resource and Information Network). The goal is to raise awareness of the disease along with money for research. Marguerite Sciuk plans to be there, despite having a seizure that put her in the hospital for five days in August. It was her first in five years. “I’m healthy except from the neck up,” said Sciuk, 54, of Manakin-Sabot. She was diagnosed with Oligo-Astrocytoma in 2003, a tumor the size of a baseball in both frontal lobes of her brain. “I didn’t think I was going to be here five years later,” she said. She had surgery to remove 30 percent of her tumor and later underwent a 25-month long regimen of chemotherapy treatment with Temodar. The founder and current president of B.R.A.I.N has thrown herself wholeheartedly into advocacy for those who suffer from the disease. Sciuk said that brain tumors are one of the “orphan diseases” for which there is not a lot of research money available. “I’m passionate about making a difference, both here and in developing countries,” said Sciuk. Along with her husband Kevin she attends the yearly Society of Neuro-Oncology and has become an advocate for other brain tumor patients. “I will never forget when I woke up from surgery after a grand mal seizure, going comatose, having emergency surgery to remove 30 percent of the tumor I had that I was not given a single piece of paper to tell me about the devastating disease I had,” said Sciuk. She founded B.R.A.I.N so that other sufferers would not find themselves in the same situation. To date B.R.A.I.N. has raised more than $100,000 in research and quality of life funds. They have provided more than 600 information packets to brain tumor survivors in the Richmond area. Sciuk has forged international ties in her quest to gather and share information on brain tumor treatment. She became friends with the Zimbabwe Brain Tumor Association, Christine Mungoshi while attending a conference in England this summer. In February of 2009 she and her husband plan to travel to Zimbabwe to explore ways to improve treatment in that impoverished African country. Sciuk has also met with members of Medecins Sans Frontieres (Doctors Without Borders). Ironically, Sciuk and her husband, who will celebrate their 30th anniversary Oct. 1, considered joining the Peace Corps when they first married. Now her illness has propelled her into an international role. “I think this is part of what we’ve always wanted to do,” she said of her advocacy role. Sciuk said that brain tumor patients need to be willing to travel in order to get the best treatment. She is treated by neuro-oncolgist Dr. David Reardon at The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center. According to a B.R.A.I.N. brochure, 190,000 people are diagnosed with brain tumors each year in the United States. Brain tumors are the leading cause of cancer deaths in children. This weekend’s fundraising walk will take place at the Innsbrook Picnic Area on Dominion Blvd. Registration is from 9:45 until 10:45 a.m. and the walk begins at 11 a.m. The sign-up fee for each walker is $25, and walkers are encouraged to form teams and get pledges from friends and family. The Susan Greenbaum Duo will perform immediately following the walk. The top fundraiser will win a free week at the beach in Duck, N.C. For more information call (804) 749-3649 or visit the B.R.A.I.N. web site at http://www.brainsite.org.
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