Recap of the “Knowledge IS Hope” Conference on Malignant Mesothelioma

crowd_smallToday, September 28, was the first time we organized a regional conference in an effort to give those unable to travel to our annual Symposium a day packed with information, experts, and social mingling opportunities. In the next few years, it is our hope to organize similar smaller conferences around the country to allow more of you to participate.

This morning began with a bit of rain, which did not affect the fact that the room ended up filling up and the conference was sold out. As attendees poured in (no pun), they looked forward an impressive agenda of speakers.

Following Dr. Lee Krug’s and Mary Hesdorffer’s welcome, Dr. Harvey Pass took the stage. Dr. Pass spoke about the role of surgery in malignant pleural mesothelioma, including the International Association on Staging Lung Cancer’s staging project funded by the Meso Foundation. He also told everyone that he has a huge announcement which will be released in the New England Journal of Medicine in two weeks. We will keep you posted on that announcement, so make sure you are connected to us through our Facebook page or that we have your email so we can send you news updates.

At this point, our program was briefly interrupted for a special award. Meso warrior and Presiding Officer of the Suffolk County Legislature Bill Lindsay and his wife Pat presented Drs. Pass, Krug, Rosenzweig and Mary Hesdorffer, NP, with a Lifesaver Proclamation for his work in mesothelioma research and treatment.

Dr. Rosenzweig was up next discussing radiation therapy, followed by Drs. Krug and Ladanyi, who respectively discussed chemotherapy and genetics. Dr. Krug, in particular, emphasized the importance of clinical trial participation and he directed those interested in learning more to contact our own executive director and nurse practitioner, Mary Hesdorffer, who is an expert in clinical trials in mesothelioma.

After lunch, the conference reconvened with two talks about peritoneal mesothelioma surgery and chemotherapy, presented by Dr. Robert Taub of Columbia University, and Dr. Garrett Nash of Memorial Sloan-Kettering. Mary Hesdorffer, Nurse Practitioner, followed these two talks with her presentation on current clinical trials, and Dr. Wesa of Memorial Sloan-Kettering discussed complementary therapies for mesothelioma patients.

At this point, the conversation moved to the topic of occupational and 9/11 exposures (very relevant to our mostly New York-based attendees) and cancer risk, presented by Dr. Jacqueline Moline. Robert Komitor, Esq., followed by discussing the legal implications of mesothelioma.

All in all, the conference was a great success, and as attendees left the conference room to join the happy hour room, the Meso Foundation’s executive director, Mary Hesdorffer, said the following:

“This has been an amazing conference. The presentations were easily understood and targeted toward helping patients and family members tackle the tough decisions with which they are faced.  I was impressed by the knowledge and compassion of my colleagues. They recognize the need of this community to be empowered to make educated decisions. As the conference progressed, It became apparent that we do not have all the answers but that we are beginning to put together the mesothelioma puzzle.  Today, we  discussed surgery, chemotherapy, radiation therapy as well as complementary and alternative medicine.  Dr. Krug, the chair of our Science Advisory Board  moderated the sessions and ample time was provided for question and discussion.

We will leave this conference with a renewed sense of hope but also resolve to fund more research grants, as well as perhaps initiate a clinical trials consortium to get the answers to unresolved questions in the treatment of malignant mesothelioma. Knowledge Is Hope!”

Today is Mesothelioma Awareness Day

This morning, following a very early wake up call, Meso Foundation supporters came together on Rockefeller Plaza to raise national awareness of mesothelioma. This was the third consecutive year that the Foundation organized this awareness event.

The Meso Foundation group was visible throughout the three-hour morning show in their bright yellow shirts. During the second hour of the program, Savannah Guthrie briefly interviewed our own Rich Mosca (a meso warrior and board member of the Meso Foundation).

Here are a few other photos from the event.

Also on the 26th, the Orioles, during their game against the Toronto Blue Jays, recognized Meso Awareness Day by featuring information about the Meso Foundation on the jumbotron screen.

Orioles Game Group photo Orioles 2

Today Show and the Baltimore Orioles

Here at the Meso Foundation, every year we try to make Meso Awareness Day bigger and better. With your help and the help of all of our supporters, the buzz this year has, in fact, been louder than ever. The events that have already taken place have been an enormous success, and we know that those still to come will follow the same path. We will create a handy summary of all accomplishments as soon as this week is over. Until then, please note these upcoming events:

100_0407TOMORROW MORNING, September 26th, please tune in to the Today Show. As has become tradition, Meso Foundation staff and supporters will participate in the audience of the show and, hopefully, will be given a few seconds of air-time to tell the nation why Mesothelioma Awareness Day is so important to all of us.

TOMORROW AFTERNOON, September 26th, the Baltimore Orioles have agreed to display Meso Foundation’s logo and information about Meso Awareness Day throughout their game, encouraging their fans to visit curemeso.org to learn more and to donate.

A full Meso Awareness Day event schedule is available at www.curemeso.org/events.

The John Pavlick Miles for Meso 8K & Family Fun Run

On Saturday, September 29, 2012, Olga and Sarah Pavlick will be hosting a timed 8K race and a 2K family fun run at Burke Lake Park in Virginia. The run starts at 8 AM and more information about this event, which is sponsored by the Simmons Firm, is available on the event’s Facebook page at http://www.facebook.com/JohnPavlickFightMeso

Pavlicks-8k-2011-003_blogJohn Pavlick was diagnosed with pleural and peritoneal mesothelioma in July 2008. Although his prognosis was grim, John was determined to fight. Moreover, his wanted to make sure that his case at least be used by researchers to help others in the future. His journey began at Presbyterian Memorial Hospital in New York City one month after his diagnosis and his courageous battle ended just a few months later, on November 13th. He was only 60 years old.

The John Pavlick Miles for Meso 8K & Family Fun Run, which is now in its third year, began shortly after John Pavlick’s passing. His wife Olga and daughter-in-law, Sarah, were determined to do something to honor his memory. They wanted to raise awareness of mesothelioma and they wanted to continue John’s desire to help others through research and patients services. One day, walking through Burke Lake Park in Virginia, where they live, they fondly remembered that John and Olga often took walks in that park. That sparked their idea to organize a run/walk along those same trails!

This year, Olga and Sarah hope to focus even more than usual on those affected by the disease, so they established an Honor Wall to remember loved ones lost to mesothelioma and will be printing the submitted names on their race t-shirts as well. “We want to be a place where families can come together and honor their loved ones, provide support for those fighting meso now and educate others about the disease,” said Sarah Pavlick.

We want to wish the Pavlick family the best of luck with their event, and would like to encourage those of you in Virginia to attend. If Virginia is not in your neck of the woods, take a look here at all the other events that benefit the Meso Foundation planned around Mesothelioma Awareness Day.

Sequestration to Cause Cuts of Two Federally-Funded Mesothelioma Research Grants

capitol_bldgOn Friday, the Office of Management and Budget (OMB) issued the report mandated by the Sequestration Transparency Act[i], on the overwhelming effects of a sequester if Congress fails to act and the automatic budget cuts occur on January 2, 2013.  The report indicates just what we suspected; the scheduled automatic cuts will devastate federal funding of medical research.

OMB notes the estimates and classifications in the report are preliminary, and “if the sequestration were to occur, the actual results would differ based on changes in law and ongoing legal, budgetary, and technical analysis.”

For the National Institutes of Health (NIH), the report indicates that $30.711 billion would be subject to the 8.2 percent sequester, equal to $2.518 billion, and an additional $150 million in mandatory budget authority would be subject to a 7.6 percent cut, equal to $11 million.  The total cut to NIH would equal $2.529 billion.

In discussing the impact of the sequester, OMB notes, “The National Institutes of Health would have to halt or curtail scientific research, including needed research into cancer.”  The Mesothelioma Applied Research Foundation estimates that this would result in two less grants for mesothelioma in FY2013.[ii]

The 394 page report is available at: http://www.whitehouse.gov/sites/default/files/omb/assets/legislative_reports/stareport.pdf

To contact your Senators and Congressional Representatives and urge them to act and avert sequestration, please visit our action center:

http://www.curemeso.org/c.kkLUJ7MPKtH/b.3091043/k.8B0A/Action_Center/siteapps/advocacy/ActionCenter.aspx


[i] To learn more about the Sequestration Transparency Act [STA, P.L. 112-155] , visit Thomas.gov and search HR 5872.

[ii] This estimate is based on the decline in spending levels from Fiscal Year 2011, when 23 mesothelioma research grants were awarded.  www.nih.gov