In the Shadow of Advocacy: A Meso Morning on Capitol Hill

Wednesday July 11, was Advocacy Day for us here at the Meso Foundation. In a later blogpost, you’ll hear me refer to this Wednesday before our 2012 Symposium as Virtual Advocacy Day but for those of us meeting (some of us, for the first time) on the Hill, it was Advocacy Day. Period. While we put out the call to tweet and post on Facebook awareness on mesothelioma research, I was joining Meso Community member Robena Reid on a visit to Capitol Hill. Our appointment was with Senator Jim Webb of Virginia’s office. I had been asked by the Foundation to shadow her for the morning, write up a report for our blog, and take photographs.

Now here is the true confession: I have never advocated anything before in person. I have emailed my representatives, both on the State and Federal level, but never have I gone to the Hill to speak on the issues. Any issues. This morning I was far out of my comfort zone really not sure what to expect.

The good news is I had Robena Reed to follow. Robena is part of the Department of Transportation; but regarding mesothelioma, Robena lost her mother to the disease. She has now taken it upon herself to prepare for visits with her representatives and bring to their attention the facts and truths of this horrible disease.

We met with a representative of Senator Webb’s, not the senator himself; but Legislative Correspondent McKenzie Bennett (pictured with Robena here) was focused, attentive, and approachable. She asked questions, sincere and thought-provoking questions. This kept us both on our toes, and soon I found myself stepping into the conversation between Robena and McKenzie.  Having your talking points printed from the curemeso.org website prior to your meeting will ensure you have the facts that you need.  Should your staffer have questions, take advantage of this opportunity to follow up with them after the meeting.  Together, we spoke for the community, providing statistics not only specific to Virginia but specific to mesothelioma and meso patients from coast-to-coast. When McKenzie concluded our visit, I admit to feeling elated with the morning meeting. Robena and I had just concluded an audience with Senator Jim Webb, bringing mesothelioma, its community, and its interests before our representative.

Then it dawned on me that we had a group of fifty in total, all of us speaking on your behalf.

The morning on Capitol Hill was a real education, and the last place I ever planned to find myself. I found a new appreciation for being able to make a difference. It is quite humbling and, yes, inspiring that we have the ability and the means to make a difference like this. I left Capitol Hill at the end of the day a little wiser on the process in which laws are made and the government serves its people, and understanding what happens when voters talk to their representatives. It was also inspiring to watch Robena take action, to hear her speak for the meso community. I’m already thinking of next year and what I can do differently.

I also hope, next year, I am asked once again to shadow Robena. After working with her on the Hill, I know I still have more to learn.

Taking in the Sights: Things to Do in Washington D.C.

Before we know it, the Mesothelioma Applied Research Foundation’s 2012 Symposium will be happening. Some of you may be joining us online (and welcome aboard — make sure you have your questions ready for the asking!), but for those of you making the trip to the Nation’s Capital, maybe you will want to plan an extended weekend around your time with us.

Sounds like a solid plan as there is a lot to see and do in Washington. Just off the top of our heads, we can recommend:

Along with these sights, there are some terrific exhibits geared for all kinds of interests in the week of the 2012 Symposium: Continue reading “Taking in the Sights: Things to Do in Washington D.C.” »

The Meso Foundation’s Hope Builder Award 2012 Recipient: Bonnie Anderson

At the Meso Foundation’s annual symposium — this year, happening July 12-13 at the Omni Shoreham Hotel in Washington, DC — individuals are honored for superlative service to the community, ranging from volunteer efforts to advancement in research. The Bruce Vento Hope Builder Award recognizes an individual or organization advocating for change on a national and international level. Recipients of the Hope Builder Award have dedicated their time and their drive to educate people about mesothelioma and its devastating effects on families and society. The Meso Foundation awards the 2012 Bruce Vento Hope Builder Award to Bonnie Anderson. Bonnie Anderson was instrumental in having September 26th declared as National Mesothelioma Awareness Day by the United States Congress. She has worked tirelessly to raise awareness of mesothelioma and voiced her support for Congressman Lance’s MODDERN Cures Act. Bonnie’s challenges have ranged between breaking into a male-dominated heavy industry field during the 1970’s, performing investigative research in areas well beyond her college degrees, and facing (and surviving) mesothelioma, and her story continues to present day where she is a regular participant in support group calls and helps counsel new patients both in her own community and around the world online.

Her journey began shortly after graduating from college with a dual degree in Elementary Education and Library Science. Faced with few options due to the Vietnam War and low enrollment in primary schools, Bonnie applied for a posting at a local oil refinery in mechanics. She completed a three-year training program to become part of a vanguard of female industrial electricians. For twelve years she worked in the strenuous environment of heavy industry before returning to her love of teaching and of research. It was then that she became a middle school librarian and never looked back.

It was in 2001 when Bonnie became increasingly ill. A year later, she was diagnosed with mesothelioma.

In November 2011, Bonnie was honored by the New Jersey Work Environment Council for her mesothelioma advocacy. A nine-year meso survivor, Bonnie was recognized alongside a distinguished group of honorees including Lisa Jackson, the Administrator of the U.S. Environmental Protection Agency and Congressman Frank Pallone of NJ’s 6th Congressional District. Bonnie was chosen for “raising awareness about asbestos-caused mesothelioma by getting bills passed in New Jersey and Congress to designate September 26 as Mesothelioma Awareness Day and for winning a landmark lawsuit against ExxonMobil for secondhand exposure to asbestos.” At this year’s Meso Foundation Symposium, Bonnie will be the recipient of the 2012 Bruce Vento Hope Builder Award.

It is with great pleasure and joy that we at the Meso Foundation name Bonnie this year’s Hope Award receipent.

Have you made arrangements to join us — either virtually or physically — for this year’s symposium? The Meso Foundation Symposium 2012 takes place in Washington DC this year, at the Omni Shoreham Hotel. This year, presenters include Raja Flores, MD, Giovanni Gaudino, PhD,  Steven Hahn, MD,  Harvey Pass, MD, Daniel Sterman, MD, David Sugarbaker, MD, Raffit Hassan, MD,  Robert Kratzke, MD, Lee Krug, MD, and many others, discussing a wide range of topics covering the latest in science and mesothelioma treatment advances. Join us in Washington DC or join us online as we at the Meso Foundation ask you “What’s Your Question?”

The Meso Foundation’s Pioneer of the Year Award Recipient: Dr. David Sugarbaker, MD

At the Meso Foundation’s annual Symposium — this year, happening July 12-13 at the Omni Shoreham Hotel in Washington, DC — individuals are bestowed honors for superlative service to the community, ranging from volunteer efforts to advancement in research. The Pioneer Award was designed to support individual scientists and clinicians of exceptional creativity who propose pioneering – and possibly transforming approaches – to major challenges in mesothelioma treatment and/or research. This year’s recipient of the Pioneer Award is Dr. David Sugarbaker. Dr. Sugarbaker in addition to his novel approaches to mesothelioma surgery has contributed a vast array of impressive research topics in peer reviewed medical journals.  He has trained many young surgeons and has inspired countless others to remain committed to mesothelioma research and treatment.

Have you made arrangements to join us — either virtually or physically — for this year’s symposium? The Meso Foundation Symposium 2012 takes place in Washington DC this year, at the Omni Shoreham Hotel. This year, guests include Raja Flores, MD, Stephen Hahn, MD, Raffit Hassan, MD, Robert Kratzke, MD, Harvey Pass, MD, Daniel Sterman, MD, David Sugarbaker, MD, and Robert Taub, MD, PhD among others. Presentations include a wide range of topics covering the latest research, novel approaches to treatment, and reflective moments with members of the meso community. With so many amazing people in attendance, come join us in Washington DC or join us online as we at the Meso Foundation ask you “What’s Your Question?”

Taking It to the Bank: Reflections on the 2012 IAHFIAW Conference

Last week I had the distinct pleasure of attending here in Washington D.C. the International Association of Heat & Frost Insulators and Allied Workers Conference, a one-day event calling together physicians, scientists and researchers to announce their partnership with Mt. Sinai Medical Center in establishing a tissue bank (Insulators Tissue Bank or ITB).

Representing the Meso Foundation, I was delighted to be a part of this event that so closely aligns with our interests. This tissue bank is being established as a repository of asbestos-related-tumor tissue specimens and fluid samples from a highly exposed population of asbestos insulators in order to support research that aims to better understand the mechanisms of asbestos-induced cancer, and to develop interventions and cures for asbestos-related cancers, such as mesothelioma.

The Insultators Union General President, James A. Grogan, is currently issuing a call to action to approximately 8,000 insulators to participate by agreeing to donate tissue samples should they be diagnosed and treated for an asbestos-related disease.  He plans to soon expand participation in the ITB to other trade unions that also have high incidence of asbestos-related disease. Continue reading “Taking It to the Bank: Reflections on the 2012 IAHFIAW Conference” »