Mesothelioma Applied Research Foundation third Annual International Symposium on Malignant Mesothelioma 2006
"Believe in a Cure"
The third annual International Symposium on Malignant Mesothelioma, held by the Mesothelioma Applied Research Foundation (MARF), was held in Chicago, Illinois this October 20 - 21, 2006. MARF is a national organization dedicated to eradicating mesothelioma as a life ending disease through funding research, helping patients obtain the best medical treatment, and advocacy. This three tier approach was mirrored in the presentations of this year's symposium, with the overarching theme, "Believe in a Cure."
The past two international symposiums have been held in Las Vegas, Nevada, but this year's Chicago venue was chosen as a midway ground for travelers from both coasts. The symposium was housed in the Sheraton Hotel and Towers where many attendees stayed as well. Also at the Sheraton Hotel and Towers, the International Mesothelioma Interest Group (IMIG) held their biannual international conference. The IMIG conference focused on medical research done around the world and new medical treatment options, as well.
Roger G. Worthington, P.C. was a co-sponsor contributor to both the MARF conference and the IMIG conference.
Friday, October 20, 2006
During the quick breakfast that began at 7:30 a.m., we saw many new faces and were able to catch up with old friends. But thirty minutes of mingling was over quickly and time for the morning panel which focused on mesothelioma from a world-wide perspective. Dr. Michael Harbut gave his summary on asbestos exposure in the U.S. Dr. Harbut is a member of the MARF Board of Directors. Following Dr. Harbut was Dr. Nick de Klerk of Australia, speaking about the Wittenboom crisis, and Dr. Rabab Gafaar who discussed the effects of asbestos use in Egypt and nearby developing countries.
At approximately 9:00 a.m., the second panel began, moderated byDr. Harvey Pass, Chief of the Division of Thoracic Surgery and Thoracic Oncology at the New York University School of Medicine and Comprehensive Cancer Center. Dr. Pass is also the Chairman of the Science Advisory Board of MARF.
Dr. Pass offered his own thoughts between each of the presentations, including Dr. Bruce Robinson's intriguing speech on Meso Biomarkers(that is how to better detect and diagnosis meso). Dr. Robinson was followed by several summaries from researchers who have received funding from MARF, including more information about Libby, Montana, novel biomarkers, and DNA screening. Dr. Sam Hammar also gave a short presentation on pathology followed by Dr. Raja Flores who prepared an excellent summary on the uses of radiological imaging.
The third panel began around 10:30 a.m. and focused on some of the foundational biology of mesothelioma with presentations by Drs. Brooke Mossman and Michele Carbone. They were followed by more summaries of MARF-funded research on epigenetic changes, critical cellular signalers found with mesothelioma, and new pharmacological targets for meso.
At noon, Drs. Helen Clayson and Mary Hesdorffer presented their research on pain, symptom, and side effect management while everyone enjoyed lunch. Many caregivers found this information quite useful.
At close to 12:30, an exciting presentation on multi-modality management of peritoneal mesothelioma was delivered by a stellar group of doctors: Dr. Robert Taub (oncologist at ColumbiaPresbyterian Medical Center in New York and member of the Science Advisory Board of MARF), Dr. David Chabot, Dr. Raffit Hassan of the National Cancer Institute and member of MARF, and Dr. Paul Sugarbaker, oncologist at the Washington Cancer Institute in Washington D.C.
Later that afternoon, Dr. Pass and Dr. Flores spoke about thesurgical treatments for pleural mesothelioma. Dr. Flores is a thoracic surgeon at Memorial Sloan-Kettering Center in New York. Their presentation was followed by a series regarding standard first-line therapies by Dr. Jeremy Steele. More summaries on MARF-funded research began around 3:30 p.m. including information on Pemetrexed (ALIMTA) and Thalidomide, a drug that prevents blood vessels from growing.
Every year during the symposium, time is taken to remember those who have passed away from mesothelioma. Friday afternoon's "Tribute to Our Heroes: Ceremony of Remembrance for Loved Ones Lost to Mesothelioma," was a time for reflection for all present. Many wrote special messages on small rocks provided by MARF and then placed these messages in the rock garden just below the wall of remembrance.
Later that night, loved ones were again remembered and many stories were shared over dinner. Terry Lynch, who is the Vice President at Large, Legislative Director and Health and Safety Director for the International Association of Heat & Frost Insulators & Asbestos Workers and serves as a Director of the Pacific Heart, Lung & Blood Institute (PACHLAB), along with Brian Glen, the Business Manager for Local 17, shared their own personal stories of loss and stories from their union members diagnosed with mesothelioma. They gave special recognition and thanks to people and organizations that continue to make a difference for mesothelioma patients, including MARF, PACHLAB, Roger G. Worthington, and Dr. Robert Cameron (Chief of Thoracic Surgery at the David Geffen School of Medicine at UCLA in Los Angeles, California).
Meso patients stood up in the dinner crowd introducing themselves to the audience and briefly sharing their experience with mesothelioma. Sadly, some were present because of a recent diagnosis just weeks before, but many shared stories of success, of being cancer free, and of finding good doctors.
Around 8:00 p.m., near the end of the dinner, Sue Vento, wife of late Congressman Bruce Vento and member of the MARF Board of Directors, presented the Bruce Vento Hope Builder Award to Jeffrey Cooper of SimmonsCooper, LLC. Sue Vento's message focused on words that Bruce often said to her, "Be good, and you'll be beautiful." Bruce was referring to how beautiful someone is when they perform good deeds for others.
Humbly accepting the award, Jeffrey Cooper reminded the audience that good deeds are often accomplished by more than one person. He gave thanks to the "doctors and to Roger Worthington for caring about research when no one else did and caring for what happened outside of a lawsuit." He thanked MARF and the mesothelioma community itself which "gives us all hope everyday."
But the icing on the cake was a performance by Jordan Zevon and his friend Jordan Summers. Zevon is the son of rock and roll musician Warren Zevon who passed away from mesothelioma in 2003. The duo captured the attention of the entire audience through their performance of their new song My Heart is Your Home, Joke's on Me, and not to mention, Warren Zevon's hit, Werewolves of London. The entire audience clapped, sang, and howled along with "the Jordans."
Saturday, October 21
Saturday morning came quickly as many more presentations were scheduled. After another wonderful breakfast, the symposium rocked forward with a panel about future targets which Dr. Nicholas Vogelzang, member of MARF's Board of Directors and thoracic oncologist at the Nevada Cancer Institute in Las Vegas, Nevada, moderated. Dr. Daniel Sterman began with a soup to nuts assessment of clinical trials, followed by Dr. Sunil Sharma's presentation on inhibitors. Dr. Steven Albelda spoke about the latest developments in gene therapy, Dr. Richard Kornbluth spoke on immunotherapy treatments, and then summaries on MARF-funded research ondendritic cell-based immunotherapy and angio-immuno agents was given. (
Around 10:00 a.m. Dr. Hedy Kindler, co-chair of IMIG and Director of the Mesothelioma Program at the University of Chicago inChicago, Illinois, spoke on novel targeted therapies. A series of highly technical medical research funded by MARF followed. Because presentations had exceeded their time limit, the scheduled roundtable scientific discussion and summary between Dr. Nicholas Vogelzang and Dr. Raja Flores was cancelled and the program moved straight into lunch.
Many of the attendees were looking forward to lunch when keynote speaker, Senator Dick Durbin (D-IL) addressed a combined crowd of both MARF and IMIG (International Mesothelioma Interest Group) attendees, prior to that the two organizations had been following their separate agendas. Senator Durbin's speech reflected on the need to make mesothelioma a natural interest. Senator Durbin was a friend of Bruce Vento's and recalled the way Bruce passionately sought to combat mesothelioma through raising awareness, bringing information to patients, doctors, and the government. Senator Durbin then acknowledged many others who are working to raise awareness, including Jeffrey Cooper and Dr. Brad Black, author of An Air That Kills: How the Asbestos Poisoning of Libby, Montana, Uncovered a National Scandal.
Durbin went on to discuss what more needs to be done than just raising awareness, that action needs to be taken. He hopes to ensure proper funds from the NIH (National Institute of Health) are allocated for mesothelioma research appropriately. To do this Durbin mentioned that it will take a joint effort, "curing mesothelioma should not be a bipartisan issue," and he is working with other senators to ban asbestos use. Senator Durbin illustrated how asbestos use hurts more than those who work directly with it. He referred to the ten workers who were recently exposed to asbestos while attempting to dispose of it properly in the tunnels that run under the nation's capitol building in Washington, D.C. Durbin hopes to see an end to asbestos exposure and requested that patients and families continue advocating. He said that it will take real life stories to make a difference, to get the government's attention, and he urged the audience to continue pursuing this avenue.
Later, Senator Durbin fielded questions from the audience and listened to many people's personal struggle with mesothelioma.
After lunch, attendees broke into small groups for a time of empowerment through personal sharing. The caregiver's small group encouraged each other to not be afraid of asking for help and taking time for themselves without feeling guilty. But they also provided more than words of encouragement to each other, many offered helpful information and valuable resources to others unaware of how to seek help.
While the patients themselves certainly had sorrowful stories to share, more expressed words of enlightenment, helpfulness, support, and positive attitudes about the future.
Those coping with the loss of a loved one found strength and support with others' stories. Many learned that it was ok to grieve, to be sad, to be angry, and to look forward without forgetting the past.
Chris Hahn, Executive Director of MARF, gave the final presentation on advocacy and activism around 3:30 Saturday afternoon. He reported on how MARF and many of its affiliates were currently raising awareness of mesothelioma through advocacy and offered several suggestions to those at the symposium of how to get involved in their local community. He ended with a message of hope, hope that mesothelioma will start to receive proper funding and attention and hope that new medical treatment options will soon be available.
On Saturday evening a reception cruise launched from the hotel to tour downtown Chicago. Even though it was chilly outside, everyone kept warm mingling with each other over a buffet style dinner and open bar. The double-decker cruise boat had an open air deck but a warm and cozy lower level where most of the merriment took place. Less than an hour into the ride, everyone had crammed downstairs to sing along with the two guitarist playing Motown hits. In small available pockets of space, some people were able to dance, and everyone had a great time. Coincidentally, the final song played was Werewolves in London, which Jordan Zevon sang again to all those onboard
Even though the cruise boat docked at 9:00 p.m. and the symposium itself had officially ended, many people stayed to talk to each other for several more hours. A flourish of phone numbers and other contact information was exchanged between new friends, and old friends hugged each other tightly before saying goodbye. But everyone left with a better sense of hope and belief in the research being done on mesothelioma, the advocacy taken around the world, and the community being built by mesothelioma patients and their loved ones. While part of the purpose of the symposium is education, another is building relationships. Everyone walked away with this, giving them hope, allowing them to "Believe in a Cure."
