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.

Live Broadcast of Mesothelioma Conference for Patients and Family Members

International Symposium on Malignant MesotheliomaThe Mesothelioma Applied Research Foundation will provide an online live broadcast of its annual International Symposium on Malignant Mesothelioma on March 6-7

Alexandria, VA (PRWEB) February 27, 2014

On March 6-7, the Mesothelioma Applied Research Foundation (Meso Foundation) will make available a free-of-charge live broadcast of its 11th International Symposium on Malignant Mesothelioma. The Symposium is a unique event that covers important treatment information and research advances presented by mesothelioma experts. The Meso Foundation understands that many mesothelioma patients are unable to travel for health reasons, so to ensure the community can still access this life-saving information, live video coverage of most session will be available through the Meso Foundation’s website.

The free live stream is a real-time broadcast of the Thursday and Friday sessions of the Symposium. Only a computer (or smart phone/device) and an internet connection are needed to access the live stream, which will be available athttp://www.curemeso.org/symposium. The same webpage also contains the full agenda of the event.

Some of the topics covered during the Symposium and its live stream include pleural and peritoneal mesothelioma, immunotherapy, post-surgical recovery, early detection, novel therapeutics, radiation oncology, chemotherapy: poison or antidote?, chemo brain, survivorship, nutrition, exercise, caregiver conversations, healing from loss of a loved one, getting involved, and an update on the work of the Meso Foundation.

The Symposium is geared to attendees from all walks of life, including patients and their families, advocates, medical professionals, and those who have lost a loved one to mesothelioma. The Symposium will be held from March 5-7 at the Hilton Alexandria Mark Center in Alexandria Virginia. Symposium events will include an advocacy day on Capitol Hill, science and community sessions, a Celebration of Life ceremony, an Awards Dinner, a Community Dinner featuring the Meso Fighters Band, and more. A full list of events, topics, and speakers can be found at http://www.curemeso.org/symposium.

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.

Three Notre Dame Students to Attend International Mesothelioma Conference

Three Notre Dame student investigators to attend the 2014 Mesothelioma International SymposiumThe Mesothelioma Applied Research Foundation applauds the University of Notre Dame for sending three student investigators to the Mesothelioma Applied Research Foundation’s International Symposium on Malignant Mesothelioma from March 5-7.

Three student investigators from the University of Notre Dame will attend the Mesothelioma Applied Research Foundation’s International Symposium on Malignant Mesothelioma this year as part of a plan to finalize the “James A. ‘Jim’ Grogan Endowed Fund for Excellence” at the university. Jim Grogan is General President of the International Association of Heat and Frost Insulators Union (formerly the Asbestos Workers) and is a friend of all who are trying to treat and cure mesothelioma and other asbestos-related diseases.

The three students this year were selected from applications submitted to Dr. Deb Rotman at Notre Dame’s Center for Undergraduate Scholarship Engagement (CUSE) program. The students will be given a stipend that will cover all their housing and travel expenses and payment for the time spent in their summer scholarship. The CUSE Program at Notre Dame “creates opportunities for undergraduate research by connecting students to resources,” said Dr. Deb Rotman, the Director of the CUSE Program at Notre Dame, who can be contacted at rotman.1(at)nd(dot)edu.

“This is a unique opportunity to capture young students, with the hope that they will develop a lasting passion for mesothelioma clinical research, and a commitment to the patients with whom they will interact at the Symposium,” said the executive director of the Mesothelioma Applied Research Foundation, Mary Hesdorffer, NP.

The Jim Grogan Endowment will be used to fund a student each year for a Summer Internship in asbestos related medical research: specifically, the early detection, effective treatment or cure of asbestos induced disease, including mesothelioma and lung cancer. These ‘Jim Grogan Fellows’ will hopefully help many researchers in years to come.

The Meso Foundation’s International Symposium on Malignant Mesothelioma will be held from March 5-7 at the Hilton Alexandria Mark Center in Alexandria Virginia. Symposium events will include an advocacy day on Capitol Hill, science and community sessions, a Celebration of Life ceremony, an Awards Dinner, a Community Dinner featuring the Meso Fighters Band, and more. A full list of events, topics, and speakers can be found at http://www.curemeso.org/symposium.

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.

Recipient of the Outstanding Nurse Award Announced

Anne AlessandriniWe are excited to announce that the 2014 recipient of the Meso Foundation’s June Breit and Jocelyn Farrar Outstanding Nurse Award is Anne Alessandrini of the Brigham and Women’s Hospital.

At the start of 2014, the Meso Foundation introduced the June Breit and Jocelyn Farrar Outstanding Nurse Award, named in memory of two courageous women and nursing professionals who battled mesothelioma. As members of the Meso Foundation’s Board of Directors, June Breit and Jocelyn Farrar both cherished the meso community and worked diligently to raise awareness and research funds to win the war on mesothelioma. With this award, we honor an individual in the nursing profession who exhibits an optimistic, determined, and generous spirit reflective of both June and Jocelyn. You can learn more about the award, and June Breit and Jocelyn Farrar on our website.

Upon announcing the award, we began seeking a recipient through a nomination process. Meso Foundation community members submitted nominations for nurses who positively impact their lives. After receiving numerous nominations, we narrowed down the pool to six finalists. We then let the community decide on the winner through a voting process. We provided short biographies for each finalist and asked the community to vote for the nurse who they thought should receive the Outstanding Nurse Award. After receiving hundreds of votes, we had our winner: Anne Alessandrini.

Anne began her career in the nursing profession as a full-time nursing assistant in the Thoracic Intensive Care Unit (ICU) while she put herself through nursing school full time on nights and weekends. In December of 2007, she graduated from Lawrence Memorial/Regis College School of Nursing and began her career working in cardiology at the Brigham and Women’s Hospital in Boston, Massachusetts. After a year and a half, Anne decided to return to the Thoracic ICU at Brigham and Women’s, and this is where she continues her career today. Aside from her work in the Thoracic ICU, Anne works with a Nursing Liaison group conducting follow-up appointments in the homes of mesothelioma patients. Anne enjoys working with this unique patient population and as she states, “I feel privileged to be allowed into peoples’ lives during such a vulnerable time.” Anne’s passion and positive attitude is evident as she continues, “Every day I try to bring a smile to my patients and their families. I enjoy the challenges of each and every day working in the Thoracic ICU. The best part is getting to know who people really are, not just a diagnosis or medical record number, but the actual person.” She also expresses the fulfilment she finds in “watching the patients progress knowing that even when they may doubt themselves, I can help push them to accomplish their goals.”

The June Breit and Jocelyn Farrar Outstanding Nurse Award will be presented at the Meso Foundation’s Awards Dinner on March 6, 2014 as part of the Foundation’s International Symposium on Malignant Mesothelioma. The Symposium will be held from March 5th through 7th in the Washington, DC metro area. For more details, visit our Symposium page.

GUEST BLOG: Cam Deaver and his Happy Voices

Cam Deaverby Cam Deaver

Shortly after my HIPEC surgery, I started hearing voices. Talking, laughing, sometimes crying. But mostly happy. Now I hear them every day. And I often have visions of faces, too.

I’ve never talked with anyone about this phenomenon because it doesn’t upset me. And I don’t think doctors could do anything about it anyway. Really, I don’t want it to change ever, because it has given me tremendous comfort and strength as a mesothelioma survivor.

The phenomenon began when I went to the Meso Foundation’s Symposium last year. That’s where I first heard the voices and saw the faces and felt the hugs of survivors, families, and doctors who knew what I was going through.

I had exchanged messages online with many of them before, and I had even talked to a few of them on the phone, but nothing prepared me for the experience of meeting in person at the Symposium.

I was just a couple months into my recovery at the time, and I felt like I had turned the corner. I was happy with my circumstances and thought I had an abundance of positive energy to share.

My wife and I expected the Symposium to be a somber affair—three days immersed in the gloom of illness and fear and desperation. We promised each other we’d do everything possible to spread cheer and give others a lift.

But we never had the chance. From the moment we arrived, we were caught in a wave of friendship, concern, and hope that never let go.

Don’t misunderstand—there were certainly many serious discussions and some sad moments. But more than we could have imagined, we saw encouragement beat back worry, knowledge overcome fear, gratitude conquer grief, and smiles shine brighter than tears.

Those are the voices and faces that come around every day now.

When I’m concerned about my future health, I hear Dr. Carbone’s exuberant Italian accent (and see his waves of luxuriant Italian hair!), Dr. Pingpank’s calm confidence, or Dr. Alexander’s deep concern, and I know that there are scores of doctors and researchers working to help me.

When I’m confused about test results, treatments, or what steps to take next, Mary is there offering insight, wisdom, and encouragement and keeping me grounded and focused on getting healthier.

I see Melinda, Maja, Erica, Erin, Jessica, Anna, Dana, and Beth raising money, funding research, advocating, organizing, speaking, writing, and reaching out to support me.

I see Hanne, Marina, Shelly, Don, Betty and others who have lost loved ones but continue to work ceaselessly for those of us still fighting. I see a husband and son play their hearts out in the Meso Fighters Band, just weeks after losing their wife and mother.

I see a few people who have since passed away, like Janelle. I met her only once, toward the end of her fight, but I still remember the way her eyes and smile and determination sparked hope in everyone around her.

I hear and see all the beautiful souls who will not let mesothelioma win; those who joyfully count the days, weeks, months, and years of life and love that cancer can never steal. They are quick with a message or a call when I’m having a down day. They give practical advice about dealing with cancer and share infinite strength whenever I need it.

Going into last year’s Symposium, I thought I was doing great in my battle with mesothelioma. Nonetheless, I left the conference with ten times the information, hope, and courage I had before, and the people I met there continue to bless my life in real ways every day.

I hope you can come this year. There are sessions and events that touch on all aspects of beating this disease and dealing with its impact on our lives.

Reading information online doesn’t compare to meeting in-person with people who get it because they have lived it and made it through to the other side. In the grim world of cancer, this conference is the happiest place on earth.

I want you to hear voices and see faces all year round. It’s a beautiful, amazing thing.