Mesothelioma foundations, like all non-profit organizations, rely heavily upon grants, bequests and other donations from individuals and organizations in order to achieve their mission.
The goals and methods of each individual mesothelioma foundation differ slightly—research for cures and treatments, public and patient education, patient support, legislative lobbying, or a combination—but overall, they work for the same common goal: a cure.
The Mesothelioma Applied Research Foundation (MARF) focuses on:
- funding high quality and promising research projects internationally, chosen through peer review
- helping patients connect with mesothelioma experts and obtain information on cutting-edge treatment options
- advocating in Washington, D.C., for federal mesothelioma research funding
MARF’s Board of Directors includes: Hanne Mintz, President of Paragon Language Services, Inc.; Richard Mosca, an active member of the mesothelioma patient community who was diagnosed in December 2006; Dr. Michael J. Becich, Professor and Chairman of the Department of Biomedical Informatics at the University of Pittsburgh School of Medicine; Don Bendix, former CFO, Ellison Machinery Co.; Dr. David S. Ettinger, Alex Grass Professor of Oncology at the Johns Hopkins University School of Medicine; Dr. Axel-Rainer Hanauske, Vice President of Lilly Oncology Medical Europe, Australia, and Professor of Medicine at the Technical University in Munich; Dr. Lee M. Krug, Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center; Michael S. Lagana, Managing Partner and Vice President of Business Development for BAS Rotary, LLC; Terry Lynch, International Vice President at Large, International Association of Heat and Frost Insulators and Allied Workers; and Leon Pendarvis, musical director for NBC’s “Saturday Night Live.”
Their solid Science Advisory Board includes: Dr. Lee M. Krug, Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center; Dr. Steven Albelda, William Maul Measey Professor of Medicine in the Department of Medicine, Associate Director of the Pulmonary Division, Director of Lung Research, and Co-Director of the Thoracic Oncology Laboratories at the Perelman School of Medicine, University of Pennsylvania; Dr. Michele Carbone, Professor and Chair of the Department of Pathology at the University of Hawaii Medical School; Dr. Marc de Perrot, Thoracic Surgeon at the Toronto General Hospital, University Health Network, and Associate Professor, Division of Thoracic Surgery, University of Toronto; Dr. Petr F. Hausner, Associate Professor in the Department of Medicine at the University of Maryland School of Medicine; Dr. Hedy Lee Kindler, Associate Professor of Medicine at the University of Chicago and Director, Mesothelioma Program; Dr. Robert A. Kratzke, Associate Professor of Medicine at the University of Minnesota Medical School; Dr. Edward Levine, Professor of Surgery and Chief of the Surgical Oncology Service, Wake Forest Baptist Medical Center; Dr. Steven E. Mutsaers, Senior Scientist and Research Group Leader at the Lung Institute of Western Australia and University of Western Australia; Dr. Anna Nowak, Perth Mesothelioma Centre and National Research Centre for Asbestos Related Diseases; Dr. Kenneth Rosenzweig, Associate Member of the Department of Radiation Oncology at Memorial Sloan-Kettering Cancer Center; Dr. Jeremy Steele, Co-Director of Bart’s Mesothelioma Research; Dr. Robert N. Taub, Vivian and Seymour Milstein Professor of Clinical Medicine, Columbia College of Physicians and Surgeons, and Director, Columbia University Mesothelioma Center; Dr. Anne S. Tsao, Associate Professor in the Department of Thoracic/Head & Neck Medical Oncology at the University of Texas M.D. Anderson Cancer Center, and Director, Mesothelioma Program.
In addition to malignant mesothelioma patients and their families, the Foundation has successfully enlisted the financial aid of law firms, drug companies, and companies formerly involved with asbestos (one corporate donor is Owens Corning), an achievement that deserves recognition.
The Mesothelioma Research Foundation of America (MRFA) states its mission quite simply: fund research that will lead to the quickest cure for mesothelioma.
MRFA has been working toward that goal by funding clinical trial research at laboratories around the world. One such project, at the Mesothelioma Laboratory at the USC/Norris Comprehensive Cancer Center in Los Angeles, has yielded encouraging results with an angiogenesis drug called Veglin. Phase I results were reported to the American Society of Clinical Oncology, showing success in blocking tumor growth in patients suffering from lymphoma, sarcoma, Kaposi’s sarcoma and colon and lung cancers. In some instances, Veglin was successful in stabilizing and/or reducing previously untreatable malignant tumors. Phase II trials began in 2004.
MRFA’s Board is led by founding member Jerry Neil Paul, an asbestos litigation specialist with an insurance background and strong relationships with unions. The members of its Medical Advisory Board are Dr. Jeffrey Scott, a medical oncologist with extensive clinical trial participation; Dr. Michael Koss, a Pulmonary and Mediastinal Pathologist and current Professor of Pathology at LAC/USC Medical Center; and Dr. Parkash Gill, head of the tumor and vascular biology laboratory at the University of Southern California, who has been supervising Veglin’s clinical trials.
In addition to donations from unions, law firms, and individuals in memory of asbestos victims—MRFA’s Wall of Honor is a sobering reminder of the far-reaching impact of this disease—the organization hosts fund-raisers, such as golf invitationals and, the “Aim to Cure” shoot and Contra Costa County Sheriff’s Charity Ball.
The Asbestos Disease Awareness Organization (ADAO) is a “grassroots” group, founded by asbestos victims and their families. Focusing on victim’s rights to adequate research, treatment, fair compensation, and the right to file suit, their stated mission is to:
- Serve as the united voice for all asbestos victims
- Unite asbestos victims
- Educate the public and medical community about asbestos-related diseases
- Support research that leads to early detection, prevention and a cure
- Ensure equitable compensation for victims and their families
- Ban the use of asbestos
Because ADAO is an independent organization, with no financial or political ties to drug companies, law firms or asbestos-involved companies, the organization can promise that it will not be influenced by these entities. ADAO is funded exclusively through voluntary contributions and staffed by volunteers.
ADAO’s accomplishments, from its inception in 2004 to date, are impressive, with many international asbestos disease presentations, global conference participation, and Senate testimony sessions. ADOA has also developed videos, slide shows and written resources to promote public education and provide needed information to asbestos victims and their families.
As “grassroots” as the ADAO might be, and as voluntary as their staffing is, there is a star among the volunteers. Their Science Advisory Board includes Dr. Richard Lemen, former Assistant Surgeon General of the United States, retired Deputy and Acting Director of the National Institute for Occupational Safety and Health.
In addition to larger organizations such as MARF, MRFA and ADAO, smaller organizations, usually formed in memory of a victim, also struggle for a cure in their own way. Funds raised by these smaller groups are sometimes funneled into the larger foundations, although some have conceived more targeted, individual application of funds.
The Mark Buttitta Memorial Foundation for Research is one such organization. After Mark’s death in 2002, his family recognized a lack of funding for mesothelioma cure research, resulting from the disease’s low incidence and the vulnerable position of the disease’s victims—usually blue-collar workers with limited political and lobbying power.
Although, as an advertising executive, Mark did not fit the typical demographic profile of mesothelioma victims, his family was compelled to join the fight by supporting research. Money raised through individual donations and fundraisers supports the groundwork necessary to apply for research grants. In this way, collective small donations become disproportionately effective. A recently approved generous grant for education and research from the National Institute for Health was partially made possible as a result of this dedicated Foundation.
Kati’s Hope was founded in 2005 by Kathleen Maloney, daughter and niece of asbestos fatalities and victim herself. Because her point of asbestos contact was through dust on her father’s clothing, the lymphoma she developed 40 years later was not attributed to asbestos exposure; biopsy results proved what she had immediately suspected.
Donations to Kati’s Hope go into their Breath Bank, which assists victims directly by defraying expenses not covered by insurance, and in some cases, personally; local volunteers will help victims and their families in their homes with tasks that they can no longer manage themselves.
Large or small, funded by government grants or individual donations, these organizations have recognized the acute need for supplementary mesothelioma research and education funding, and increased support for mesothelioma victims. Through their efforts, future victims may find their prognoses much brighter.