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.

Wednesday

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.

Meso survivors at the Symposium!

Thursday

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.

Dr. Sugarbaker accepting his Pioneer of the Year Award.

Friday

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!

The more I thought about it, the more the idea grew on me. Why not go? I would be with other mesothelioma patients, their loved ones, MARF staff, and Union members all there to bring about awareness for this disease. I called my mom, and she jumped at the chance to go and spend the weekend with me in NYC. So this way I wouldn’t be here alone. As the date grew nearer, airline and Broadway show tickets were bought and hotel reservations were made. We arrived in NYC on Saturday and had plans to see a couple of shows before getting together with The MARF staff and other participants.

We thoroughly enjoyed the shows we chose, Priscilla, Queen of the Desert on Saturday night, and Wicked on Sunday afternoon. We left straight from Broadway, jumped onto a rickshaw and made our way the 8 blocks to the MARF sponsored dinner. When we arrived, the staff was there to greet us, as well as many people I had met at the Symposium in June. Within the next 20 minutes we filled the back room of the restaurant with people all there for one cause.

I loved that my mom got to be a part of it, and see this part of my life. She now wants to do what she can to bring about more awareness where she lives (she thought she was just tagging along to see some plays!). A highlight of the night was a check presentation for $10,000 for MARF from the proceeds of a 5K-walk/ race that was held earlier this week. What a great kickoff for the start of Mesothelioma Awareness Day. We made a plan to meet up the next morning outside the Today Show at 5:30 a.m. T-shirts were distributed and we all said our goodnights.

The alarm went off at 4:30 a.m. Whew- is that early! I didn’t have trouble waking up, though. I was excited about the morning, wondering how many of us were going to be there, and it was just cool to be going to the filming of the Today Show. Mom and I walked the few blocks from the hotel to Rockefeller Center, and quickly found our group of meso warriors (as we affectionately refer to ourselves!) and got in line to wait for the signal to go stand around the fence on the Plaza. We waited for about an hour and a half, and in that time, our numbers grew from about 7 or 8 of us to over 50! 50 people were wearing bright orange, with the words CUREMESO.ORG across the front of our chests. What a display of solidarity!

The signal was given, and we made our way to the fence, front and center. There we stood all around the fence, a wall of orange shirts with Cure Meso banners, and flags. We waited then for the hosts of the Today show to come out. We knew we would have at least a couple hours of standing there, but it was a truly festive mood surrounding all of us.

Our wait was over when the doors opened and Ann Curry, Lester Holt, and Al Roker came out and stood right in front of us. From what I gathered, a lot of friends and family saw us in the background with our banners! One of the highlights was having Al Roker come out and talk briefly with some of the people from MARF, and then give a plug about Mesothelioma Awareness Day. Another highlight was seeing Jennifer Garner as she walked around gathering school supplies for the needy (unsurprisingly, she is just as stunning in real life as on film). Before we knew it, it was over, and time for the meso warriors to go our separate ways. We gathered for a group picture, and after, said our goodbyes.

My mom and I ended our day by visiting Ground Zero. I guess I didn’t know what to expect. I have not been to the World Trade Center sight since 1996, long before the towers fell. My mom had been there 9 years ago, almost 1 year to the day after September 11th, 2001.  For her to see the progress was amazing, but for me to see how different it was, was strange. There were literally thousands of people milling around, but getting into the actual site was not to happen. What I didn’t know is that they only let a certain number of people in a day, and tickets must be bought far in advance. We just walked around the perimeter and went to the preview sight. I looked at pictures from that fateful day, and all I see is the dust covering all those people. Before meso entered my life, I may have seen something different. Now I see the dust, and am waiting, as I am sure are they, to see what happens with the health of all those incredible people who responded on September 11th.

It’s always bittersweet saying goodbye at things like this. The thing about mesothelioma, or any cancer really, is you just don’t know what is going to happen. You say goodbye, send your new friends on their way, and pray like crazy you see them next year. Your heart is just filled with love and compassion for the people who are fighting this disease, and for their caregivers who were there in the absence of their loved ones. Your heart grows by leaps and bounds with every passing year, seeing people who are winning their own battle with illness, while the heart breaks into a million pieces when you hear that someone succumbs to the disease. Just when I don’t think I can take anymore, I attend an event such as this and meet more incredible people. It restores my resolve to keep fighting, to keep bringing about awareness and to keep spreading hope.

So I’ll continue to do what I do- help bring about awareness and continue to share my story. Mesothelioma is a horrible disease, yes, but there is hope, there is information and we are doing all we can to work toward a cure.

Put September 26 on your calendar next year, and join us again, on the set of the Today Show for Mesothelioma Awareness Day!