Sunday, April 13, 2014
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OXFORD — Every time a sneaker slaps the ground on May 3, Corrie A. Painter moves one step closer to her goal of finding the cure for angiosarcoma.
And like the runners in the fourth annual Angiosarcoma Awareness 5K Race, it can’t be fast enough.
In 2010, when at 37 years old, she found a lump in her breast that turned out to be one of the worst cancers: angiosarcoma, Dr. Painter went online to learn more. The scientist in her found a Facebook page started by another patient, Lauren Ryan. It was a support group, really, where a handful of people wrote that they’d been diagnosed and didn’t know what to do. She was working on her doctorate and she had some ideas.
But funding research for a rare cancer that at that time was thought to affect only 300 people worldwide each year was not going to be easy. The federal government must spend money for research so that the largest number of people are helped, and Dr. Painter understood that.
“It is what it is. It has to be that way,” she said. “And I get that.”
So she knew if she was going to be able to get funding for some specific research to get started, she’d have to do it herself. The road race is just one of the fundraisers she and her “family” of angiosarcoma fighters have put together to fund research that could one day save their lives. They’ve also found sponsors including Ryder Charitable Foundation, Pachulski Stang Zeihl & Jones, Province and D3 to help fund the studies.
Her husband, Ted Painter, a marathoner, organizes the road race, working constantly to promote it because every dollar is important. Other fundraisers across the country include cycling events and a white water rafting trip, which Dr. Painter has made with her stepson and one of her daughters.
While she’d planned to do her postdoctoral work studying Lou Gehrig’s disease — amyotrophic lateral sclerosis or ALS — she changed her plans and began focusing on cancer. Angiosarcoma is a blood vessel-driven tumor, and if scientists could find a way “to stop these types of blood vessels,” they’d be making progress. She had to find a way to make that happen because the research could be helpful for other types of cancer, as well.
But there would need to be studies and research and Dr. Painter wanted to surround herself with the top people in cancer research, the most important people in the field. It didn’t take long until those people were reaching out to her. Every night, after her work day ends, she heads home and works on angiosarcoma activities, connecting patients with the right doctors, working on funding, checking in on research.
“She is angiosarcoma,” Mr. Painter said. “She’s really the one making this stuff happen, she literally does it all by herself. She’s amazing.”
Since 2010, the Angiosarcoma Awareness group, now with a website, cureasc.org, has funded three-quarters of a million dollars in research at five laboratories throughout the country. There are currently two ongoing clinical trials that have provided patients and their families with assistance in finding treatment options. They’re also working with the University of Massachusetts Medical School to establish an angiosarcoma tissue bank where scientists could access tissue from angiosarcoma tumors.
Twice each year, Dr. Painter, who spends her time at the University of Massachusetts Medical School doing research on melanoma, travels to Memorial Sloan-Kettering to meet with researchers there. She hears about their studies, offers input and watches as they move closer to her goal.
The group also funds studies at the University of Texas M.D. Anderson Cancer Center in Houston, the University of Minnesota, Washington University in St. Louis and Moffitt Cancer Center in Tampa.
But for her and others who have had a diagnosis of angiosarcoma, waiting is difficult. The angiosarcoma Facebook pages are filled with messages of hope that start out with “Clean scans!!!” countered by other posts which begin with RIP as another member of the group is taken.
“When we find the cure, it will be bittersweet,” she said. “Almost everyone who was on that page when I found it is gone. Every single one.”
The cancer has a small survival rate at five years after diagnosis. About 30 percent live that long, a frightening reality the Painters don’t think about as often now as they used to because it does no good. But it’s there. The family knows some long-term survivors and that provides hope.
Still, a cure is what they’d like to see, and the sooner the better, and so this year, they are beefing up the race.
“Dick and Rick Hoyt from Team Hoyt will be there,” Mr. Painter said. “And this year we have sponsors: Isador’s Organics, the Motivact Group and Sneakerama. So there will be face painting, a DJ, balloon animals and a bounce house.”
The Hoyts will have completed their 32nd Boston Marathon and have said it will be their last.
Mr. Painter said the race usually draws about 100 runners and walkers, but he would love to see a larger number this year. There are also opportunities to volunteer and there will be raffles, including tickets to a Red Sox game.
While the angiosarcoma race is sanctioned by the USA Track and Field organization and official times will be recorded by the Central Mass. Striders, it is open to all ages and abilities, including those who wish to walk the 3.1-mile course.
There is also a ¼ -mile (400 meter) kids’ race for ages 5 to 12 at 8:45 a.m., before the 5K. Awards will be given to the top three finishers in three age groups (5-7, 8-10, 11-12). Children can be registered online or at the race.
To learn about the race or to register, visit www.curesasc.org. The race begins at 9 a.m. May 3. Parking is available at Oxford High School, 495 Main St. The registration fee is $25 and all of the funds support angiosarcoma research.
Contact Kim Ring at email@example.com. Follow her on Twitter @kimmring.