Foundation For Young Adult Cancer Patients
August 17, 2009
Mending the Gap
By Ellie Oleson CORRESPONDENT
"There isn't enough research or treatment being done for people 15 to 40." -Conor J. O'Brien
Survival rates for children and older adults with cancer have soared 30 percent in the past two decades, during which there has been no improvement in survival rates for adolescents and young adults with cancer.
"This is wrong," said Shrewsbury resident James W. Coghlin Sr., chairman of the Coghlin Companies Inc. of Worcester.
He founded the 15-40 Connection nonprofit foundation in 2008 to "close the AYA (adolescent and young adult) gap" in survival rates, research, education and awareness for adolescents and young adults ages 15 to 40.
Mr. Coghlin was touched by cancer when his best friend, Mark R. Ungerer, former chief executive officer of FLEXcon Co. Inc. of Spencer, died at age 55 in 1995. Mr. Ungerer had been devastated when his son, David, died of leukemia at age 16 in 1977.
"After David's death, Mark wanted to help the Dana-Farber Cancer Institute. In 1986, he started the first Jimmy Fund golf tournament in Worcester County," Mr. Coghlin said.
After his friend's death, Mr. Coghlin took over and renamed it the Mark R. Ungerer Golf Tournament.
"In 23 years, we have raised more than $6 million for Dana-Farber," Mr. Coghlin said.
He is also active in the American Red Cross, American Heart Association, YOU Inc. and many other charitable organizations. He was the 2009 recipient of the Telegram & Gazette's Isaiah Thomas Citizen of the Year Award.
Mr. Coghlin said, "15-40 is my first foundation. Once we were certified a 501(c)(3), what do we do next? You reach out to people."
He first reached out to his executive assistant, Susan Cyr, "who has been invaluable," then to Michael Welch, headmaster of St. John's High School in Shrewsbury, who invited Mr. Coghlin to speak.
"I asked this class of seniors how much cancer rates had improved for people in their age group. Many guessed 50 percent or 35 percent. Then one boy said 0 percent. He knew. He was hired as my summer intern," Mr. Coghlin said.
Conor J. O'Brien, 18, of Auburn knew a lot about cancer. He had been in eighth grade in 2005, when his sister, Elise Margaret O'Brien, 32, a nurse's aide at UMass Memorial Medical Center - University Campus in Worcester, died of cervical cancer.
"The vaccine came too late for Elise. But it's not too late for others. We want people to get to the doctor. There isn't enough research or treatment being done for people 15 to 40. How do we know you don't need a colonoscopy until you're 50? What tests are appropriate and not appropriate for young adults?" Mr. O'Brien said.
About 67,000 cancer patients ages 15 to 40 are diagnosed each year in this country. Cancer is the No. 1 disease-related cause of death for this age group, he said.
A 15-40 Connection slogan is "Mind the Gap."
"Gap cancer patients" regularly receive medications designed for children or older adults. "They just try to adjust doses to meet the needs of a teenager, who might be 6 feet tall and 140 pounds. This age group is lost in the middle. They are too old for pediatrics and too young for adult medicine. We want doctors and researchers to be conscious of the gap," Mr. O'Brien said.
He said what complicates treatment and research is the attitude of younger adults, who believe themselves to be invincible or too busy establishing careers and families to see a doctor.
He said one goal is to get the 15-40 Connection into the national spotlight, to reach millions of young adults and researchers. He is looking into partnerships with 75 hospitals.
He plans to open a branch of 15-40 at Old Dominion University in Norfolk, Va., where he will be a freshman next month.
"Conor has played a huge role in advancing the 15-40 Connection. He is a person who will impact many lives," Mr. Coghlin said.
Mr. O'Brien worked with the Waltham-based Hart-Boillot Inc. public relations firm, which donated its services to help develop and launch the charity's new Web site at www.15-40.org. He also put the charity on social networking sites, including Facebook, Twitter, MySpace and LinkedIn.
The Fraternal Order of Eagles, Marlboro Aerie 3565 is hosting a Rock and Stroll to benefit 15-40 Connection Oct. 2 and 3 at Ghiloni Park in Marlboro, with a Battle of the Bands from 10 a.m. to 5 p.m.
Mr. O'Brien invited anyone interested in learning more to send an e-mail to info@15-40.org, to write to 15-40 Connection, 17 Briden St., Worcester, MA 01605, or to visit www.15-40.org and view a five-minute video, "Lost in the Middle."
The video features Dr. Stephen E. Sallan, chief of staff at Dana-Farber Cancer Institute, and Dr. Karen H. Albritton, Dana-Farber's consultant to 15-40 Connection.
Dr. Sallan said the 15-40 gap is "a national disgrace," and Dr. Albritton said it is past time to learn "what's different about the biology of a young adult."
Also featured on the video is a young Holden mom and "gap" cancer patient, Debbie Mancini Wharff, who had an infectious laugh and engaging smile. She died July 14.