A Message from the CEO

Melinda Kotzianby Melinda Kotzian, Chief Executive Officer, Mesothelioma Applied Research Foundation

Over the last 24 hours, news broke that some cancer charities raised funds and did not use the money responsibly. The Meso Foundation has always prided itself on transparency when it comes to financials. We voluntarily subject our organization to an audit every year and then submit our financials to be reviewed by Charity Navigator (they rate us as a 4-star (out of 4) charity and give us a transparency score of 100 (out of 100)) and the Better Business Bureau. At curemeso.org/about, you can view our latest 990, financial statements, and annual report.

To make sure that other charities are financially responsible, you can do the following:

  • Look for financial statements and annual reports on the organization’s website
  • Check www.charitynavigator.org or www.bbb.org to see how the organization is rated
  • Call the organization and ask how much of their money is going toward programs

A reputable nonprofit organization will have a level of financial transparency. At the Meso Foundation, individuals contribute 65% of the money coming in to the organization, while law firms and pharmaceutical companies contribute the remaining 35%. Of these contributions, 86% goes directly into our programs, including patient and family support, research, education, advocacy, and prevention. Additionally, 9% goes towards fundraising and 5% goes towards management.

With $0.86 per dollar going into programs, the Meso Foundation is able to help over 600 patients, caregivers, and bereaved per month and has funded $9 million in mesothelioma research. Additionally, with the help of our advocacy programs, $9.3 million in government funding has been contributed to mesothelioma research.

To learn more about the Meso Foundation, what we do, and how we rely on donations, visit curemeso.org/about.

Introducing Muriel Evans-Buck, Director of Development

Muriel Evans-BuckAiming to strengthen its major fundraising efforts, the Meso Foundation added Muriel Evans-Buck as the Director of Development. Muriel started on December 1, 2014 bringing with her extensive experience in professional fundraising.

Muriel’s career has included senior positions in development with several national organizations. She has worked for Sickle Cell Disease Association of America and Campaign for Tobacco-Free Kids. She has also worked in the political arena as a policy analyst for the late Governor Bruce Sundlun of Rhode Island and is a former member of the Electoral College representing the State of Rhode Island.

“Funding mesothelioma research, education, support, and advocacy is our first priority. Muriel is here to help us mobilize the resources necessary to do just that,” said Melinda Kotzian, the chief executive officer of the Meso Foundation.

“I am committed to increasing visibility, awareness and revenue for the Meso Foundation. I look forward to working side by side with the meso community,” said Muriel.

The new Director of Development holds a Bachelor of Science degree from Shaw University in Raleigh, North Carolina and a Master of Science in Organizational Leadership from Nyack University. She is an avid runner and enjoys reading and listening to classical music. She is the proud mom of Kennedy, a high school student.

We will miss you, Jessica!

jessica2

Dear friends,

We wanted to share with you the news that our director of government affairs, Jessica Barker, will be, for personal reasons, leaving her position at the Meso Foundation at the end of August. During the three years spent at the Foundation, Jessica has been instrumental in advancing the meso community’s issues on Capitol Hill. She has helped create/solidify relationships on The Hill and developed great partnerships with other organizations.  We are so grateful for all that she has done to help the mesothelioma community.  She will be missed very much!

Although this was a very difficult decision for her, Jessica is looking forward to spending more time at home, with her young children.

Please feel free to contact Jessica with your well wishes by emailing her at jbarker@curemeso.org.

Melinda

Melinda Kotzian, Chief Executive Officer
Mesothelioma Applied Research Foundation
mkotzian@curemeso.org

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Jessica Barker, the director of government affairs at the Meso Foundation, giving a presentation at the 2014 International Symposium on Malignant Mesothelioma

Results of the NGR-hTNF Mesothelioma Clinical Trial Now Available

Find information about the NGR-HTNF pleural mesothelioma clinical trial.Today, MolMed, an Italian pharmaceutical company, released results from its NGR-hTNF for mesothelioma clinical trial. While the trial, which enrolled 400 pleural mesothelioma patients, demonstrated no increases in overall survival of the entire population, it did show an improvement in survival for those patients with a poorer prognosis and whose disease had progressed between first-line chemotherapy and the start of the trial.

Moreover, for this latter group of patients, researchers observed a 40% longer progression-free survival.

Dr. Julie Brahmer, who led the trial at Johns Hopkins (this was a worldwide trial), said that “it is great to see a survival advantage with the addition of a new drug in combination with chemotherapy for mesothelioma.” She added that, “unfortunately the study was not positive for the overall population. It is unclear why this subpopulation would benefit and the whole population would not. I look forward to the full presentation of the results.

“This study is the first of its kind in mesothelioma, and may provide a new treatment option for patients who had cancer growth after standard chemotherapy,” said Lee Krug, MD, the chair of the Board of Directors of the Meso Foundation, and thoracic oncologist at Memorial Sloan-Kettering Cancer Center.

More information is available through this press release by MolMed.

The Meso Foundation previously wrote about this clinical trial, and discussed the NGR-hTNF clinical trial in one of its “Meet the Mesothelioma Experts” broadcast.

Meet the Mesothelioma Experts: Defactinib, a New Investigational Agent for Mesothelioma

Meet Dr. Joanna C. Horobin, the Chief Medical Officer at Verastem, Inc. in the Meso Foundations ‘Meet the Experts’ series.On April 8 at 9 PM Eastern time, the Mesothelioma Applied Research Foundation (Meso Foundation) will hold a new installment of its ‘Meet the Experts’ series, featuring Dr. Joanna C. Horobin, the Chief Medical Officer at Verastem, Inc., who will discuss the company’s latest investigational agent, defactinib, which is being developed for use in patients with pleural mesothelioma. Those interested in attending via telephone can RSVP by visiting http://www.curemeso.org/experts.

Dr. Horobin will be interviewed by Mary Hesdorffer, Meso Foundation’s executive director and experienced nurse practitioner. The goal of this “Meet the Experts” installment is to learn more about this novel agent, the purpose of which is to delay the time to progression after having a response or stabilization with first-line therapy. Currently, defactinib is available only through its clinical trial.

Dr. Horobin, M.B., Ch.B. has been the Chief Medical Officer at Verastem, Inc. since October 2012.

The Meet the Experts series is a live podcast created by the Meso Foundation with the goal of providing patients, their family members, and other interested parties with the most up-to-date information on mesothelioma treatment and research, directly from the physicians pioneering these advances. Past teleconferences have featured:

Dr. Lee Krug – Memorial Sloan-Kettering Cancer Center
Dr. Dan Sterman – University of Pennsylvania
Dr. Raffit Hassan – National Cancer Institute
Dr. Julie Brahmer – Johns Hopkins
Dr. Tobias Peikert – Mayo Clinic
Dr. Joseph Friedberg – University of Pennsylvania
Dr. Valerie Rusch – Memorial Sloan-Kettering Cancer Center
Melissa Culligan, RN – University of Pennsylvania

The topics, which have included immunotherapy, gene therapy, drugs, experimental mesothelioma treatments, and biomarkers, are usually discussed through an informal interview, focusing on questions important to patients, in particular. Listeners are encouraged to ask questions while listening to the call.