The Work of the Meso Foundation is a Family Affair: Honoring Lotte

LotteLotte has done it all! She has stuffed envelopes, hand-written thank you notes, peeled hundreds (!) of potatoes, washed as many dishes, cared for mesothelioma patients who have stayed in her home, financially supported the Meso Foundation – all in the name of finding a cure for mesothelioma.

She is not a mesothelioma patient, and nobody in her family is a mesothelioma patient. She doesn’t have any friends with mesothelioma (other than the ones she met through the Foundation), and she may not have ever known about mesothelioma had Mary Hesdorffer (the Foundation’s executive director) not entered her life many years ago. Lotte is Mary’s mother-in-law.

To anyone who has ever worked in the non-profit sector, the notion of family members helping with events and performing office work is not foreign. At the Meso Foundation, too, our family members are as passionate as we are about this important cause and mission, so it’s not surprising that they often donate their time and effort to help us achieve our goals. We are immensely grateful to all of them.

During this past year, Lotte has had health setbacks of her own. Diagnosed with pancreatic cancer about a year ago, she has gone through surgery, a difficult recovery, radiation, chemotherapy, and recently, a recurrence.

A holocaust survivor and a breast cancer survivor, she has been an inspiration to all of us.

During this difficult time, we want Lotte to know that we are so very grateful for her and her contributions, and also simply for her presence.

Stay strong, dear friend!

Thank You to Our Heroes on Memorial Day

American flagsIn 2013, we published a blog post for Memorial Day. This year, we want to take a look back at this post, as it remains important. The original post follows:

Memorial Day is the time when we honor those who served our country and paid the ultimate price for our freedom. The Mesothelioma Applied Research Foundation honors those men and women who lost their lives as a result of their service, including those who served in the military and succumbed to malignant mesothelioma.

“In honor of those who have fallen victim to mesothelioma and for those who have been exposed and may develop mesothelioma in the future, the Foundation dedicates our efforts to continuing to fund peer-reviewed medical research that we hope will lead to prevention, early detection, more effective treatments and eventually a cure,” said General H. Steven Blum, a member of the Board of Directors of the Meso Foundation.

One third of mesothelioma patients worked in shipyards or are veterans who were exposed to asbestos during their time of service. Those who serve in the military often go on to careers in the public sector serving as policemen, firemen and first responders where they again suffer the insult of asbestos exposure.

General Blum last served as Deputy Commander, U.S. Northern Command in addition to serving as Vice Commander, U.S. Element North American Aerospace Defense Command.  Prior to these last positions he served as the 25th Chief of the National Guard Bureau. He retired from both the Army and National Guard in 2010.

To learn more about asbestos exposure in the military, visit curemeso.org/asbestos.

Study Shows Bevacizumab Improves Survival in Mesothelioma

VaccineA Phase 3 French study, which will be presented at the American Society of Clinical Oncology (ASCO)’s annual meeting at the end of May, demonstrated improved survival rates for those patients who received bevacizumab in addition to the current standard chemotherapy regimen of pemetrexed/cisplatin. Bevacizumab (Avastin® Genentech, Inc.) is an antibody that blocks angiogenesis (blood vessel growth), and it is already routinely used to treat many other cancers, including lung cancer and colon cancer.

“The mesothelioma community has been waiting for this kind of news for a long time—it is the first positive phase III trial in mesothelioma since the original study of pemetrexed/cisplatin over 10 years ago,” said Dr. Lee M. Krug of Memorial Sloan Kettering Cancer Center and chair of the board of directors of the Mesothelioma Applied Research Foundation.

“The addition of bevacizumab has the potential to become a new standard of care for first-line therapy in this disease,” he added.

The study, conducted between 2008 and 2014, included 448 patients treated in 73 centers. The patients were randomized into two arms– one received standard chemotherapy (pemetrexed and cisplatin) and the other received standard chemotherapy plus bevacizumab. Overall survival was significantly longer in the experimental arm (median: 18.8 months vs. 16.1 months). The study concluded that adding bevacizumab in addition to pemetrexed/cisplatin provides a significantly longer survival in patients with malignant pleural mesothelioma, with acceptable toxicity, making this triplet a new treatment paradigm.

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.

GUEST BLOG: Meso Patients Eligible for Access Pass to National Parks and Federal Recreation Areas

Streamby Sandy Robb

Many of you have in previous years posted pictures about your travels around the country, and many seem to enjoy the national parks and other federal facilities. With summer coming, there may be a way for you to save some money while enjoying those beautiful areas.

As you are aware, the Social Security Administration classifies malignant mesothelioma as the basis for a disability determination. One of the benefits that attach to that status is the availability of a free, lifetime Access Pass that allows free entry and numerous discounts at national parks, federal recreation areas, and facilities managed by the Forest Service, the National Park Service, Fish and Wildlife Service, Bureau of Land Management, and Bureau of Reclamation. Generally, the Access Pass means that the person and his or her vehicle (up to 4 adults) will be admitted free to the national parks, wildlife refuges, national forests, and other facilities run by these agencies.

The savings allowed by the pass can be quite substantial. To put it into perspective, both Yellowstone National Park and Yosemite National Park charge $30 entrance fees per day, but both are free to Access Pass holders. In addition to park admission benefits, the Access Pass entitles the passholder to discounts on amenities, campgrounds, boat launches, guided tours, and so on. Each facility will have its own guidelines for discounts. It should be noted that the pass is not honored everywhere; for example, the Access Pass is not accepted at Gettysburg. An overview of the Access Pass is available at http://store.usgs.gov/pass/access.html.

Anyone who has been rated as disabled by the SSA (or the VA) can obtain the Access Pass, either at one of the facilities authorized to issue them on-site, or through the mail. The mail-in application costs $10.00, while the in-person version is free.  The list of facilities is long, and can be found at http://store.usgs.gov/pass/PassIssuanceList.pdf. The mail-in application is found at http://store.usgs.gov/pass/access_pass_application.pdf.

To obtain a pass you must have identification to verify that you are a U.S. citizen or permanent resident, such as a US passport, a US state or territory driver’s license, or birth certificate or a permanent resident card (Green Card). Also, you will need documentation of your permanent disability.  Acceptable forms of proof include:

  • A statement signed by a licensed physician attesting that you have a permanent physical, mental, or sensory impairment that substantially limits one or more major life activities, and stating the nature of the impairment;
  • A document issued by a federal agency, such as the Veteran’s Administration, which attests that you have been medically determined to be eligible to receive benefits as a result of blindness or permanent disability;
  • Proof of receipt of Social Security Disability Income (SSDI) or Supplemental Security Income (SSI); or
  • A document issued by a state agency (e.g., the vocational rehabilitation agency) that attests that you have been medically determined to be eligible to receive vocational rehabilitation agency benefits or services as a result of medically determined blindness or permanent disability.

If you’re in doubt about what to supply, contact the issuing agency.

Enjoy your travels, and be sure to share your photos with us when you go.