BIO 2012 Massachusetts Pavillion Patient Profiles
Patients are the reason we in the biotechnology industry do what we do, and that’s why we’ll
showcase patients in the Massachusetts Pavilion at the 2012 BIO International Convention.
Learn more about these patients and others on the show floor from June 18-21!
Paul Cellucci: Former Massachusetts Governor Paul Cellucci was diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease in 2011. Under the care of Dr. Robert H. Brown—chair of the University of Massachusetts Medical School’s Department of Neurology and one of the world’s leading and most promising ALS researchers—Cellucci was inspired to both spread hope and fuel research surrounding the disease.
“There has never been a better time to be hopeful,” said Brown. “There’s an incredible urgency to try to move forward to do everything we can do and to employ and deploy every resource to find a solution and put an end to this disease.”
Cellucci is now spearheading fundraising for the University of Massachusetts ALS Champion Fund, an initiative to raise $10 million that will go directly to Dr. Brown and his team towards ALS research and breakthroughs.
“My hope”, says Cellucci, “is that we can get breakthroughs that will slow or stop ALS progression and ultimately lead to a cure—the sooner, the better.”
John and Sarah Coughlin: When the father-daughter duo of John and Sarah Coughlin ride in the Pan-Mass Challenge bike ride each year, they stand out. Sporting bold signs attached to their jerseys reading “living proof father” and “living proof daughter,” the pair celebrates victory over cancer—times two.
John and Sarah are both survivors, both diagnosed at Brigham & Women’s, and both treated at Dana-Farber. John was diagnosed with stage 3 rectal cancer and treated with radiation, chemotherapy and surgery. Sarah was diagnosed with non-Hodgkin’s lymphoma and treated with chemotherapy, radiation and Rituxan, a chemotherapy drug that was developed at Dana Farber in the mid 1990’s and licensed to Roche - Genentech.
Today, they ride the 196-mile Pan-Mass Challenge to raise money and awareness for cancer research and cures.
When asked why they ride, John noted: “Riding the PMC each year is about giving back but also about moving forward. If our story can motivate just one patient to undergo the next treatment, if we can inspire new hope in just one cancer victim, if we can help people realize that cancer can be cured, then riding the PMC is the easy part.”
Richard Fuentes: Richard Fuentes was diagnosed with multiple sclerosis in 2001, when a series of flare-ups left him partially blind. A selfdescribed IT whiz who enjoys reading, music and working with computers, the diagnosis was understandably lifealtering.
But more than 10 years later and with the help of a drug discovered and manufactured right here in Massachusetts, Richard is focused on keeping healthy. As a patient on Biogen Idec’s AVONEX—a once-weekly treatment aimed at reducing flare-ups and slowing the disability associated with MS—Richard’s relapses have been under control. He strives to do something physically active every day, and enjoys hiking and staying active with his girlfriend’s children, ages 6 and 14.
Richard has made a point to share his story with other patients, even helping to produce exercise videos meant specifically for MS patients. He knows that as a patient with some true healthcare challenges, Massachusetts is the place to live.
“People fly here from all over the world to get the best medical treatment available,” Richard said. “Massachusetts is the hub of the medical world.”
Dara Torres: Dara Torres, Olympic swimmer and winner of 12 Olympic medals, is no stranger to the aches and pains that come with being a world-class athlete. But after injuring her knee and losing most of the cartilage in that joint, she considered orthopedic centers all over the world before choosing the Cartilage Repair Center (CRC) at Brigham and Women’s Hospital.
The CRC, was founded over a decade ago as the first U.S. center solely dedicated to the treatment of cartilage damage, and is still among the busiest cartilage transplant centers. Researchers at the Partners hospital-run center work with industry partners, including Genzyme, to discover the next frontier in orthopedic medicine.
Dara remembers her treatment, which began with an arthroscopy to take a piece of cartilage from a non-weight bearing area. The cartilage cells are then cultivated and grow to 50 to 60 million cells. Those new cells are transplanted back into the knee in a second surgery.
“What you hope happens is the cartilage grows onto your bone and hardens and thickens,” she said. I didn’t know there was anything out there like that.” Having recovered from her cartilage transplant, Dara has returned to competitive training to qualify for the 2012 Olympics in London.
Ken Spassione: Ken was a great husband, wonderful grandfather, respected in his work as a rehabilitation specialist—he was the quintessential “go-to guy.”
But Ken had a recurring diabetic foot ulcer that would not heal, right at the site of a previous amputation of the toes on his left foot. His primary care physician would make some progress with the wound, but it would not fully heal.
Ken’s condition impacted his life significantly; he began to feel dependent on others and suffered with depression. It wasn’t until Ken found the wound care center at Clara Maas Hospital near his home in New Jersey that things began to look up.
Ken began receiving treatment with Apligraf, a living cellbased product supplied as a bi-layered skin substitute. Apligraf was discovered and is manufactured in Massachusetts by Organogenesis, a regenerative medicine company. Organogenesis is currently building the world’s largest automated living cell manufacturing plant in Canton, Mass., and expects it to be online in 2013.
Today, Ken tries to spread the word to other diabetics and wound patients: “If you’re a candidate for Apligraf, go for it. Have it done. Because it can change your life.”