Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
A Sense of Community and Renewed Hope
Community—a sense of community and renewed hope. That is what the overwhelming feeling was at the Mesothelioma Applied Research Foundation's (MARF) annual symposium on malignant mesothelioma. The symposium took place from Wednesday July 11th to Friday July 13th in Washington DC—no where else can you have, all in one room, world-renowned doctors, other medical staff, lawyers, patients, their loved ones and caregivers, as well as those who have lost members of their family to the disease. Everyone came together for a single cause, to help find a cure for mesothelioma. What a very powerful testament to what the MARF is about.
was advocacy day. A day set-aside for attendees to go to Capitol Hill and have their voices heard. I had 3 appointments that day to see the aids of my two senators, and my representative. It was all at once emotional and empowering to go to the offices and ask for their help in designating a line of funding for mesothelioma. It is a vastly underfunded disease, and since so many mesothelioma cases are a result of military service, we are asking for the Department of Defense to set aside $5 million for mesothelioma research.
Here are some interesting facts on the Congressional Directed Medical Research Program (CDMRP):
- Breast Cancer has received $2.66 BILLION in fiscal years 1992 -2011, with an additional $120 million to be awarded in fiscal year 2012.
- Mesothelioma has been awarded $8.9 million in funding and is eligible to compete with 8 other cancers for a pot of $12.8 million in fiscal year 2012.
- Breast cancer has received 6,107 CDMRP awards to date, while mesothelioma has received 13 awards.
We are asking for a mere $5 million for research. This is why the advocacy day is so vital. You can do your part from home too—call your senators and representatives to tell them to set aside this money for mesothelioma research and make your voice heard.
I will step down off my soapbox now and tell you about the rest of the week.
was the official first day of the symposium with a full day of scheduled information sessions. One of the best sessions was presented by the 7 of the leading mesothelioma specialists on the newest, cutting edge research for treating mesothelioma. What was so great about this particular session was it was set as a Q & A session, with questions being written down, emailed in, or put on the MARF Facebook page for the experts to answer. To top it off, it was live streamed so those who could not attend were able to watch via the computer.
We, as patients and caregivers, were able to interact and discuss at length issues with these doctors, which we can’t really get when we see them. The panel consisted of the biggest names in mesothelioma treatment. My own Dr. David Sugarbaker, Dr. Harvey Pass, and Dr. Raja Flores, just to name a few.
No question was off limits and, best of all, no egos were present. Each and every one of these men has one goal—to put an end to the suffering and find a cure. The foundation’s web page will have this on their website soon, so you will be able to go back and watch the session. This should be available in a couple of weeks.
The balance of the day consisted of breakouts pertaining to different needs of the people in attendance. Pain control, living your best life, dealing with stress, and a new portion this year, dealing with survivorship issues. This is a growing need in the mesothelioma community, and they were happy to address it.
The day of sessions ended with a legal panel and a little break before the evening festivities began.
Thursday evening is when they hold the gala dinner and awards banquet. It’s a night to honor people in the mesothelioma community who are committed to making a difference. The Pioneer Award was given to my wonderful doctor, Dr. David Sugarbaker, for his groundbreaking treatment and research in the disease. It was such a wonderful feeling to sit there, with two of his other patients, and listen to him tell his story. With tears in our eyes, we gave him a standing ovation—he is, after all, responsible for the three of us being there.
The Bruce Vento Hope Builder award was given to 10+ year survivor Bonnie Anderson recognizing her as an individual advocating for change on a national and international level. She is such a huge inspiration to so many, and so deserving of this award.
The evening ended with live music, a lot of picture taking, and just enjoying being in the company of many who know what this whole battle is all about.
continued with more individualized break out classes. The one I chose to attend was on fundraising and different ideas. It was quite informative and fun—it also gave me some great ideas!
The three-day event ended with everyone coming back together and the announcement of the next symposium being held in Las Vegas, March of 2013.
For more information and videos from the Symposium, you can go to MARF’s website at CureMeso.org.
The Mesothelioma Applied Research Foundation continues to be a leading source of funding and research for this disease and its hope is, as always, to find a cure. It is an honor to be a part of something, to continue to give hope, and to help build the community that so many need.
I count myself among the many that MARF has touched, not only as a source of knowledge, but friendship, information, and empowerment. I have been encouraged by their mission and am excited to see what the future brings. I hope you can join me next year in Las Vegas—and make sure you come say hi!