AWARE For ALL Clinical Trials Day
The Baltimore Sun’s Health and Science Reporter Stephanie Desmon, author of an acclaimed six-part series about breast cancer clinical trials volunteers, will speak about the critical role of clinical medical trials at CISCRP’s AWARE for All program in Baltimore on May 9, 2009.
Two courageous Maryland patients, Darby Steadman, breast cancer survivor and mother of two, and Daisy Nanton, patient volunteer and mother of five, will join her as speakers.
AWARE for All programs, which are free one-day workshops open to the public, help people learn more about clinical trials and their lifesaving potential for participants and for future generations. Local area residents will describe their experiences participating in clinical trials; prominent physicians will provide information, and attendees will learn how to decide whether or not they’d like to participate.
AWARE features information sessions and exhibits, a complimentary breakfast reception, and a free lunch. In addition to the information sessions and exhibits, all attendees can get free health screenings for Blood Pressure and Body Mass Index, Prostate Cancer, and Melanoma and will receive a clinical research educational handbook.
Maryland Senator Benjamin L. Cardin, Lieutenant Governor Anthony Brown and Baltimore Mayor Sheila Dixon are Honorary Co-chairs.
Stephanie Desmon grew interested in clinical trials while interviewing a Johns Hopkins physician working on an experimental treatment for Sickle Cell anemia.
“I wondered, what must it be like to be the first person to get a treatment, not knowing whether it’s going to work or not?” Stephanie recalls.
Stephanie learned about a clinical trial on breast cancer patients being done by Dr. Leisha Emens at Johns Hopkins School of Medicine. The treatment, which could lead to a potential therapeutic vaccine, is intended to help reengineer the immune system to attack breast cancer cells.
Stephanie got permission to spend six months exclusively following the lives of four women enrolled in the trial.
"I spent time with all of them; I went to one woman’s doctor appointments with her, and went to chemotherapy treatments with another,” says Stephanie.
As she grew closer with the four patients, Stephanie developed a powerful respect for their efforts.
“It was difficult not to be swept up in the emotions,” she says. “It’s amazing that the women in the study were willing to donate a lot of time to something they didn’t know would help them or not, while thinking that maybe it would help their daughters. That’s a great thing to be able to do. I wish more people were willing to do the same.”
Stephanie’s series, which ran for six days in October 2008, prompted heartfelt letters of thanks from women readers who had advanced breast cancer. The series was a finalist in the Scripps Howard Foundation National Award in the Human Interest category.
Courageous Mother of two takes part in trials
Darby Steadman, a 38-year-old mother and homemaker from Sevema Park, MD, had a double mastectomy for breast cancer at age 34. After that radical operation, doctors told her there was less than one percent chance of the cancer recurring. So she turned her energies to family activities and raising her children, Liam and Audrey, now 9 and 7.
But in 2007, her life changed in an instant. Darby found a pea-sized mass under her left arm. After an examination, the oncologist gave Darby the worst possible news.
‘I knew something was wrong,” Darby recalled. “The oncologist came in and said, ‘You have stage IV metastatic cancer.’ It was pretty shocking.”
In stage IV metastatic cancer, the cancer has spread to other organs. Women with Stage IV cancer typically survive one to two years.
Darby heard about Dr. Emens, and was eager to participate in the trial. “When you have stage IV metastatic cancer, if there’s a chance that a treatment could prolong your life or your child’s life, it’s not a hard decision to make,” Darby says.
During the course of her treatment, Darby noticed that another woman struggled to pay for gas to drive to and from Baltimore for treatment. Despite her own travails, Darby decided to help.
“The last thing you want to think about is ‘Do I have enough money to put gas in my car, and if I do, will I still have money to feed my family next week?’” says Darby. “That’s just not right. And if someone getting treatment also had to pay for hotel expenses, the costs would really add up.”
To help ease those hardships, Darby and some friends started the Driving Miss Darby Foundation. The group aims to raise money for women who want to participate in clinical trials, but can’t afford the miscellaneous expenses.
Stephanie, Darby, and Daisy Nanton, another clinical trials volunteer, will share their stories at the May 9th AWARE for All program.
At AWARE for All, the sense of community and connection that exists is contagious. In fact, surveys of attendees from past workshops show that 75 percent are more willing to participate in clinical trials than they were before. AWARE for All programs are held annually in major cities across the US.
AWARE in Baltimore is being offered in collaboration with the area’s finest hospitals and institutions including The Cancer Institute at St. Joseph Medical Center, GBMC – Greater Baltimore Medical Center, IMPACT - Maryland Program Advancing Clinical Trials, Johns Hopkins University School of Medicine, NCI Community Cancer Centers Program, and the University of Maryland School of Medicine.
The Baltimore Aware for All will be held at Johns Hopkins University School of Medicine Turner Auditorium, Concourse/G-Level, 720 Rutland Avenue, Baltimore, MD 21205.
CISCRP (www.CISCRP.org), the Center for Information and Study on Clinical Research Participation, is the first of its kind, non-profit organization whose mission is to educate and inform the public and healthcare professionals about clinical trials.
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