Meso Warrior Bruce Jackson Presents Congresswoman Betty McCollum with the Bruce Vento Hope-Builder Award

Dodds, McCollum, and JacksonOn April 23, 2014, mesothelioma warrior Bruce Jackson presented Congresswoman Betty McCollum with the Bruce Vento Hope-Builder Award for sending a letter to Dr. Harold Varmus, Director of the National Cancer Institute (NCI), to urge the NCI to further mesothelioma research. The Bruce Vento Hope-Builder Award is presented each year to an individual or individuals who create hope for meso warriors and their loved ones through advocacy.

In February, U.S. Congresswomen Betty McCollum (D-MN) led the effort to send a letter to Dr. Harold Varmus, urging him to create a scientific framework for mesothelioma to progress research. Representative McCollum recruited eighteen of her colleagues from both sides of the aisle to join her in sending the letter. The Mesothelioma Applied Research Foundation (Meso Foundation) has long advocated for the National Cancer Institute to increase their focus on mesothelioma, and Representative McCollum has been a stalwart champion for the cause. Representative McCollum advocates for mesothelioma in honor of her predecessor, Bruce Vento. Bruce Vento was a prominent member of Congress who, after nearly 24 years of service, succumbed to mesothelioma only eight months after diagnosis.

“I’m honored to represent the Meso Foundation community in awarding the Bruce Vento Hope-Builder Award to Rep. Betty McCollum. It’s good people like Rep. McCollum who give people like me hope for the future,” said Bruce Jackson. He added, “I have more music to make! And I’m not going down without a fight!”

Bruce Jackson, a native Minnesotan, was diagnosed with peritoneal mesothelioma in June of 2008. His doctor at the time told him to “Google it” because he knew nothing about the cancer, only that it was “terminal.” The online search for mesothelioma led Bruce and his girlfriend Beth Dodds to the Mesothelioma Applied Research Foundation. Mary Hesdorffer, Executive Director of the Meso Foundation, had them on a plane within 2 weeks of diagnosis to attend the Meso Foundation’s International Symposium on Malignant Mesothelioma in Washington, D.C., where they learned everything about this cancer.

In August of 2008, Bruce had surgery to remove his omentum and received the Hyperthermic Intraperitoneal Chemotherapy (HIPEC) procedure at the National Institutes of Health with Dr. Pingpank. Bruce remained with no evidence of disease (NED) for four years, but the cancer returned in August of 2012. Bruce had surgery at the University of Minnesota under the guidance of Dr. Robert Kratzke. Unfortunately, Bruce’s cancer returned again in March of 2014 and he is now in talks with Dr. Pingpank and his team at the University of Pittsburgh to have surgery and the HIPEC procedure again.

Bruce Jackson and Beth Ann Dodds are full-time musicians who met in 2007 in St. Paul, Minnesota when Beth auditioned to be a singer in Bruce’s band, Bruce Jackson & The Moondogs88 Band. The Moondogs88 Band is a funky, jazzy ensemble that plays in and around the Minneapolis/St. Paul area. Bruce has played piano in countless bands and studied under world renowned piano great, Manfredo Fest. Bruce has traveled the world sharing the stage with many musical greats for over 40 years. Bruce is now teaching piano, accordion, mandolin, guitar and harpsichord to children and adults in the Twin Cities metro area. Beth is a full-time student in addition to her singing career, returning to academic life to complete her degree in nutrition. Beth and Bruce are prominent members of the Meso Fighters Band, rocking the socks off of Symposium attendees each year.

Bruce and Beth even had the chance to show off their musical talent for Congresswoman McCollum, as they sang her “You Are My Sunshine.”

Bruce Jackson Presents the Bruce Vento Hope-Builder Award to Congresswoman Betty McCollum



Mesothelioma warrior Bruce Jackson and his girlfriend, Beth Dodds, represented the meso community on April 23, 2014 as they presented the Meso Foundation’s Bruce Vento Hope Builder Award to Congresswo…

Throughout this journey, Bruce is living life to its fullest, believing that despite the diagnosis of meso, life can be amazing. It might not be what most people think – that life with cancer can be amazing – but the addition of meso in his life has taught him that life is precious, beautiful and full of LOVE. He is an inspiration to us all.

To learn more about Congresswoman McCollum’s advocacy for mesothelioma research, click here.

Congress Exhibits Bi-partisan Support for NIH Funding in both House and Senate

Advocates on Capitol HillAs Congress works to map their federal spending for Fiscal Year 2015, advocacy organizations and members of Congress alike have been announcing their funding priorities for next year. The Meso Foundation has joined One Voice Against Cancer (OVAC) in asking for $32 billion in National Institutes of Health (NIH) funding, asking that Congress “end the erosion of cancer research funding.”

We are pleased to see that 186 members of the House, including 23 Republicans, support our funding request in a letter to the chairs and ranking members of both the full House Appropriations Committee and its Labor-HHS subcommittee. The letter, organized by Reps. David McKinley (R-W.Va.), Susan Davis (D-Calif.), Andre Carson (D-Ind.), and Peter King (R-N.Y.), requests that NIH receive “at least $32 billion” in FY 2015, stating:

We feel this amount is the minimum level of funding needed to reflect the rising costs associated with biomedical research. Full funding for NIH is critical if the agency is to continue to serve as the world’s preeminent medical research institution and our best hope for finding cures, improving treatments, and gaining a better understanding of the complex causes of diseases that affect millions of Americans….

The majority of the Senate (57 Senators, including 11 Republicans) signed a similar letter on April 3rd requesting the chairs and ranking members of the Senate Appropriations Committee and Labor-HHS subcommittee “maintain a strong commitment” to funding for NIH. While the letter organized by Bob Casey (D-PA) and Richard Burr (R-NC) does not mention a specific funding level for NIH, it urges appropriators “to consider the tremendous benefits of a sustained investment in the NIH.”

The Meso Foundation thanks these members of Congress for their public support of NIH funding.

Rep. Betty McCollum and Rep. Chellie Pingree to Receive Bruce Vento Hope-Builder Award

Congressional Briefing on Malignant MesotheliomaThe Mesothelioma Applied Research Foundation (Meso Foundation) announced that Congresswomen Betty McCollum and Chellie Pingree are the recipients of the Bruce Vento Hope-Builder Award, for sending a letter to Dr. Harold Varmus, Director of the National Cancer Institute, to urge the National Cancer Institute to further mesothelioma research.

Alexandria, VA (PRWEB) February 28, 2014

The Mesothelioma Applied Research Foundation (Meso Foundation) announced that Congresswomen Betty McCollum and Chellie Pingree are the recipients of the Bruce Vento Hope-Builder Award, for sending a letter to Dr. Harold Varmus, Director of the National Cancer Institute, to urge the National Cancer Institute to further mesothelioma research. They will be presented with the award during the International Symposium on Malignant Mesothelioma, on March 6.

Last month, U.S. Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) sent a “Dear Colleague” letter to all members of the U.S. House of Representatives asking them to join them in urging the National Cancer Institute to create a scientific framework for mesothelioma. The Mesothelioma Applied Research Foundation (Meso Foundation) has long advocated for the National Cancer Institute to increase their focus on mesothelioma, and congratulates Representative McCollum and Representative Pingree for their efforts on behalf of the mesothelioma community, including patients and families, physicians, advocates, and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

The idea for this letter began when Representative Pingree’s constituent, mesothelioma survivor Lisa Gonneville spoke at the Capitol Hill briefing onMesothelioma Awareness Day (September 26).

Mrs. Gonneville, a mother of four and Dayton, ME resident, pleaded that the staffers do something to address this deadly cancer. “I’ve endured all of the treatment options available for mesothelioma, which are very limited,” said Mrs. Gonneville, “my only hope at this point is clinical trials.” Congresswoman Pingree was so moved by Ms. Gonneville’s story that she, too, wanted to help the mesothelioma community in her honor.

“Congresswomen McCollum and Pingree are leading a very important effort for everyone affected by mesothelioma by encouraging the National Cancer Institute to create a scientific framework to progress mesothelioma research,” said Meso Foundation’s executive director and nurse practitioner, Mary Hesdorffer.

“This is an incredible way to help thousands of patients affected by mesothelioma, and also honor our distinguished former board member and Congresswoman McCollum’s predecessor, Bruce Vento.”

Bruce Vento was a prominent member of Congress who, after nearly 24 years of service, succumbed to mesothelioma only eight months after diagnosis.

The Recalcitrant Cancer Research Act of 2012 was signed into law by President Obama on January 2, 2013 as part of the National Defense Authorization Act (Public Law No. 112-239), giving the Director of the National Cancer Institute (NCI) the ability to identify recalcitrant cancers for which to establish scientific frameworks that will guide research efforts.

For each recalcitrant cancer, NCI is to convene a working group of both Federal and non-Federal individuals to provide expertise and assistance in developing the scientific framework. The frameworks are to be completed within 18 months of enactment, then submitted to Congress and made publicly available on the HHS website within 30 days. The bill requires the progress of each scientific framework be reported in the National Institutes of Health (NIH) Biennial Report, with an assessment of progress made in improving outcomes for recalcitrant cancers. The bill further states that the NCI Director “shall consider” each relevant scientific framework when making recommendations for exception funding for grant applications.

Mesothelioma is a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos. Medical experts consider it one of the most aggressive and deadly of all cancers. Approximately 3,500 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed while serving in the Navy or working in shipyards.

ABOUT THE MESOTHELIOMA APPLIED RESEARCH FOUNDATION
The Meso Foundation is the only 501(c)3 non-profit organization dedicated to eradicating mesothelioma and easing the suffering caused by this cancer. The Meso Foundation actively seeks philanthropic support to fund peer-reviewed mesothelioma research; provide patient support services and education; and advocate Congress for increased federal funding for mesothelioma research. The Meso Foundation is the only non-government funder of peer reviewed scientific research to establish effective treatments for mesothelioma and, ultimately, a cure for this extremely aggressive cancer. To date, the Foundation has awarded over $8.7 million to research. More information is available at http://www.curemeso.org.

Congressional Letter Requests NCI to Place More Emphasis on Mesothelioma Research

The Meso Foundation commends nineteen Members of the House of Representatives, led by Betty McCollum (D-MN) and Chellie Pingree (D-ME), for sending a letter to the Director of the National Cancer Institute urging him to further progress in mesothelioma research.

Alexandria, VA (PRWEB) January 30, 2014 American flagsOn January 10, 2014, nineteen Members of the United States House of Representatives sent a letter to the Director of the National Cancer Institute, Dr. Harold Varmus, urging him to focus on mesothelioma research. The letter urges Dr. Varmus, to create a scientific framework for mesothelioma stating that “mesothelioma, a frequently terminal cancer for which there has been very little diagnostic or treatment progress, deserves immediate attention.”

The bipartisan letter was sent by Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME), and was signed by seventeen additional Representatives (full list is included at the bottom of this bulletin). The Recalcitrant Cancer Research Act of 2012 was signed into law by President Obama on January 2, 2013 as part of the National Defense Authorization Act (Public Law No. 112-239), giving the Director of the National Cancer Institute the ability to identify deadly cancers for which to establish scientific frameworks that will guide research efforts.

Mesothelioma is one of the most deadly cancers, with only a five to ten percent five-year survival rate. With only one FDA-approved treatment for mesothelioma that extends life by only three months, many patients have to resort to off-label use of chemotherapies, drastic surgery, or participation in clinical trials. There is no test currently available for early detection of mesothelioma.

“Our community has advocated for an increased focus on mesothelioma research for many years,” said Meso Foundation’s executive director Mary Hesdorffer. “We are overjoyed to see so many of our elected officials recognizing the immediate need for mesothelioma research.”

The Mesothelioma Applied Research Foundation has independently funded over $8.7 million in peer-reviewed mesothelioma research to date.

Mesothelioma is a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos. Medical experts consider it one of the most aggressive and deadly of all cancers. Approximately 3,500 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed while serving in the Navy or working in shipyards.

ABOUT THE MESOTHELIOMA APPLIED RESEARCH FOUNDATION

The Meso Foundation is the only 501(c)3 non-profit organization dedicated to eradicating mesothelioma and easing the suffering caused by this cancer. The Meso Foundation actively seeks philanthropic support to fund peer-reviewed mesothelioma research; provide patient support services and education; and advocate Congress for increased federal funding for mesothelioma research. The Meso Foundation is the only non-government funder of peer reviewed scientific research to establish effective treatments for mesothelioma and, ultimately, a cure for this extremely aggressive cancer. To date, the Foundation has awarded over $8.7 million to research. More information is available at http://www.curemeso.org. Congressional Representatives Who Have Signed the Letter to the NCI: Betty McCollum D-MN, Chellie Pingree D-ME, Leonard Lance R-NJ, Jim Moran D-VA, Sam Farr D-CA, Don Young R-AK , Gwen Moore D-WI, Glenn Thompson R-PA, Mike Honda D-CA, Julia Brownley D-CA, Henry Johnson D-GA, Carol Shea-Porter D-NH, Nita Lowey D-NY, Frank LoBiondo D-NJ, Carolyn Maloney D-NY, Jason Chaffetz R- UT, Michael Michaud D-ME, Michael Turner R-OH, Karen Bass, D-CA.

Bonnie Anderson: Building a Relationship with your Legislators

Bonnie Anderson is advocating for mesothelioma by building relationships with her legislators, including Congressman Leonard Lance.

Bonnie Anderson with Congressman Leonard Lance (R-NJ)

Building a relationship with your legislators is a very important part of being an advocate, and mesothelioma warrior Bonnie Anderson is a wonderful example to us all. Bonnie has been one of the greatest advocates for mesothelioma research. She was the first mesothelioma warrior ever to be awarded the Bruce Vento Hope Builder award in 2012. Bonnie has established a close relationship with her Congressman, Leonard Lance (R-NJ), over many years.  She attends our Annual Advocacy Day each year when she visits his Washington, D.C. office to educate him about mesothelioma and the need for funding to progress mesothelioma research. She is active in our Meso Ambassador Program as well, where she regularly communicates with his office by sending emails directly through our action center or calling and speaking to staffers. Bonnie says, “it takes perseverance in speaking to our representatives, and becoming familiar with their aides (who have the keys to the kingdom). I tell every aide about mesothelioma, from the front desk (with the question do you know what mesothelioma is?) to every aide that I am introduced to. The key is following up so that your name is recognized when you do call, write or visit them (and you know their names too).”

This sort of legwork is necessary for members of Congress to learn your name and your issues, so that when you come along with an “ask” they already know who you are and what your issue is. Bonnie continues, “My mentor, June Breit, told me to stay on their doorsteps and to be persistent until noticed. At the time, I really thought that there was no way I could do that. Having a Congressman, his health aide and a Chief of Staff explain the process of how our political system works at each step when I do approach him is so important.” Bonnie also recognizes the importance of following up and saying thank you. “I follow up with thank yous. The unfortunate side is the lower level aides change constantly, the positive side is most upper level aides are key advisors for their Congressmen.”

Just last month, the meso community had the great success of having Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) send a Dear Colleague letter asking all of the Members of the House of Representatives to join them in urging the National Cancer Institute (NCI) to create a scientific framework for mesothelioma. At a time when Congress is very divided by a party line, Bonnie helped us to cross our greatest hurdle of getting a Republican to sign on to our letter, as it was penned by two Democrats. Often, the most difficult task of an advocate is to garner bipartisan support, but once you have the support of one member of the opposing party, more of them are likely to join.

Thanks to Congressman Lance’s pioneering signature, three additional Republicans signed on to the letter, Don Young (R-AK), Glenn Thompson (R-PA) and Jason Chaffetz (R-UT), guaranteeing a strong show of bipartisan support for mesothelioma. Congressman Lance signed on to this letter in honor of his constituent Bonnie, whom he has come to know through her advocacy. He reached across the aisle as the first Republican signature on the McCollum/Pingree letter to the NCI, which is no small feat in this divided Congress. The meso community is very grateful to Bonnie for helping us to cross this hurdle.

When the final letter is sent to the National Cancer Institute, we will post the final list of signers.

If you want to follow in Bonnie’s footsteps, sign up for the Mesothelioma Ambassador Program to build your relationship with your Members of Congress.

To learn more about the McCollum Pingree Dear Colleague Letter, check out this blog post.