Ever since attending my first Mesothelioma Applied Research Foundation’s International Symposium on Malignant Mesothelioma in 2010, I’ve made it a priority to attend every year they have one.
With the exception of only a few years, I’ve been to every one since, and this year was no exception.
Starting With Fellowship
The International Symposium on Malignant Mesothelioma was held in Philadelphia, PA, the weekend of October 24th to the 26th at The Notary Hotel, a historic hotel in the heart of Philly.
The weekend kicked off with a dinner cruise on the Spirit of Philadelphia. It was such a fun way to start the weekend in a relaxed and social environment. A lot of fellowship and friendships were made during that dinner cruise, including ending the evening with a bunch of us taking over the dance floor and having a ball. It really was a nice way to get to know everyone in a relaxed environment.
Day One: The Realities of Mesothelioma
The symposium got underway bright and early on Saturday with a breakfast buffet for all in attendance. After a warm welcome from the executive director, Brian Lepacek, we broke off into 3 rooms designated for support groups. One for patients, one for caregivers and another for the bereaved.
The support groups are safe spaces for people to be able to talk about all aspects of a mesothelioma journey and be with people who understand and won’t judge. Good thing they supplied little packages of Kleenex in every room, since conversations tend to get emotional. The support groups remind us that we aren’t alone, and our experiences all help one another.
Holistic Treatment
After a short break, the sessions in the main room started. “Integrative Medicine” was all about options to help treatment go more smoothly and that are kinder on your body. The session on nutrition after was a nice complement to the integrative medicine presentation.
The sessions after lunch were comprised of a “Pleural Tumor Board Panel” discussing cases and explaining how they go about determining treatment protocol. I found this panel particularly interesting since I had pleural mesothelioma.
Holding Asbestos Companies Responsible
The presentations for the day ended with a legal panel with pertinent information for anyone filing a lawsuit against asbestos companies, with a heavy emphasis on talc. This part of mesothelioma is something people don’t discuss enough.
Mesothelioma is caused by asbestos exposure. The asbestos companies knew way back in the early 1900s that it caused cancer but purposely hid the findings in order to make money. Their greed has cost hundreds of thousands of lives since. I urge everyone reading this: if you have mesothelioma, please contact me. I’d be happy to answer any questions about the process.
Awards Ceremony
That evening, there was a cocktail hour followed by a dinner and awards ceremony.
Each year, the Meso Foundation recognizes members of the mesothelioma community who help advance the mission in their respective areas. There is:
- A Pioneer Award, given to a member of the medical community
- The Bruce Vento Hope Builder Award, usually given to a patient who inspires others in their life
- A Changemaker Award given to any member of the community — patient, family or medical provider
- The Klaus Brauch Above and Beyond Award
This year, I was honored with the Klaus Brauch Above and Beyond Award, named after the Foundation’s very first volunteer. It honors an engaged and exemplary individual who has worked to advance the Foundation’s mission by sharing their time and talent as a volunteer. Being recognized by my peers is something that means the world to me. I held back tears as I was introduced and was incredibly touched by the support of the entire mesothelioma community. The evening ended with photos and conversation before heading off to bed.
Day Two: Looking Ahead
Day Two started with another breakfast buffet and straight into a session on “Imaging in the Future with AI.” No matter what your feelings are on AI, it’s already being widely used in medical settings, particularly in imaging. It was encouraging to see how it is being used and hear of all of the innovation that is being introduced.
The State of Mesothelioma Research
The next session on ”What’s New in Clinical Trials” held a lot of information for people looking to see what might work next if their line of treatment is no longer effective. Clinical trials are the future of mesothelioma treatment, and it was exciting to hear of all of the trials either in session or starting soon.
“Pathways to Advocacy” was next, which informed people of ways to advocate for mesothelioma research and all of the ways to get involved. It can be as simple as sharing an article like this one, all the way to holding or hosting a fundraiser to raise money for the Foundation.
After a short break, another tumor board panel was held, this time concentrating on peritoneal mesothelioma. Both tumor board panels were incredibly informative and educational. I’m glad they held them on different days, so it was easier to differentiate between treatments available.
The afternoon kicked off with an update from Michigan State University and a study they are doing on mesothelioma caregivers. This study was one funded by the Congressionally Directed Medical Research Program, which I have participated in. It is so great to hear about a funded study coming to fruition.
Finding Hope and Connection
There were 2 concurrent sessions that took place after: one was a celebration of life for the bereaved community, and a “Patient Survivorship Panel” that consisted of a moderator and 3 survivors of 4+ years. I was the moderator for the panel and had the unique distinction of being the longest-term survivor in attendance. There was so much great advice on how to live with meso and life after treatment.
The symposium ended with 2 great sessions, one on “Maintaining Emotional Balance” and the last one was a “Patient Clinical Trials Panel,” comprised of a moderator — my friend Jess Blackford Cleeton — and 3 patients who have participated in clinical trials or are currently in one. It was incredibly informative and was the perfect way to end the 2-day symposium. Ending on a note of hope for the future was fitting.
It’s All About Community
All in all, this symposium was really well-rounded with a good balance of medical info and subjects that affect everyone, from wellness to grief. The Mesothelioma Applied Research Foundation has always been about community, and this weekend was no different. Lifelong friendships were formed, and a commitment to the Foundation from families across the board is what going to the Symposium is all about.
I’m grateful to be a part of this incredible community and can’t wait for next year!
