Meso Foundation’s New CEO

MelindaThe Meso Foundation has a new CEO! Melinda Kotzian, who has thus far been the Chief Operating Officer, will now serve as the Foundation’s first Chief Executive Officer. This change in title provides Melinda with authority to fully perform all operational, administrative and executive duties.

Mary Hesdorffer, Nurse Practitioner, remains the organization’s Executive Director, and together she and Melinda share the leadership tasks of the Meso Foundation.

Donating to the Meso Foundation through the Combined Federal Campaign (CFC)

CFC_RGBIf you are a federal employee (including military personnel), you are eligible to participate in the Combined Federal Campaign’s (CFC) fundraising drive. The CFC allows federal employees to make tax-deductible donations to their charity of choice directly through payroll deductions.

The Mesothelioma Applied Research Foundation is eligible to receive your donations. In order to ensure that your donation is allocated to the Meso Foundation, please mark our CFC number in your forms:

Mesothelioma Applied Research Foundation’s CFC Number: 11856

Mesothelioma is a disease that strikes approximately 3,500 Americans per year, and that disproportionately affects military personnel. In fact, it is estimated that 30% of all mesothelioma patients served in the US Navy or worked in shipyards.

According to Wikipedia:

“the CFC is the largest workplace charity campaign in the United States and the only campaign authorized to solicit and collect contributions from federal employees in the workplace on behalf of charitable organizations. As the world’s largest and most successful annual workplace giving campaign, each year, more than 350 CFC campaigns throughout the United States and internationally help to raise millions of dollars. Nearly four million federal employees and military personnel are able to contribute to the charities of their choice during the annual charity drive, which runs from September 1 through December 15 of each year. Pledges made by Federal civilian, postal, and military donors during the campaign season support eligible non-profit organizations that provide health and human service benefits throughout the world. These contributions can be made either by cash or check, or can be automatically deducted from these employee’s paychecks.”

Review: Report on Mesothelioma

mapby Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Researchers from Creighton University School of Medicine accessed the National Cancer Database (NCD), and issued a report on their findings. They analyzed the years between 2000 and 2010. In the United States, 26,605 patients were diagnosed during this period of time. The NCD accumulates this data on approximately 70% of all cancers diagnosed in the states. If one were to add in the 30% not recorded it would take us close to the number of 3,458 cases per year that we use as a figure when we present on mesothelioma.  This supports that the numbers of diagnosed mesothelioma patients have remained fairly steady over these past years.

Not surprising were the reports that mesothelioma patients were 89% Caucasian, 78% male and 60% over the age of 70. We talk about the changing face of mesothelioma, but perhaps that perception is created because younger patients access the web, engage in social media and are able to draw more attention to their plight. Or perhaps one could argue that when 30% remain unaccounted for in this database the figures could be different in terms of age, race and gender.

Recently, I took the opportunity to speak with Dr. Karen Antman, Dean of Boston University School of Medicine, to discuss the earliest days of mesothelioma research. Dr. Antman, prior to writing one of the first clinical trials in mesothelioma, canvased the database of the Harvard system and told me that even then she was surprised by the number of young patients she found in the archives. So perhaps this phenomenon is not new.

What does not surprise me is that 36% of patients under the age of 50 underwent surgery, and 12% over the age of 80 also underwent a surgical procedure. It takes a good physicality to undergo this surgery and return to a quality of life that is sustainable and acceptable to the majority of patients.

In reading the report, what did not surprise but disgusted me, was that insurance weighed so heavily in the surgical arena. “Patients with private insurance received more surgical treatment (28%) than patients with Medicaid (22%), Medicare (18%), and VHA (12%)(p<0.009)” (J Clin Oncol 31, 2013 (suppl; abstr e18501). Our Veterans seem to be denied surgery when compared to those with private insurance.  21% of all patients in this database underwent surgery which explains why attempting to mount a robust surgical trial in mesothelioma will not be possible and we will continue to rely on case series and small powered trials to obtain surgical statistics in advising our patients.

Want to learn more about mesothelioma research? Ask one of our experts.

Facebook Exhaustion?

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There are days when all of us wonder what we are doing online so much of our day. Are you feeling vulnerable when reading stories of others who might not be doing well or fearfully comparing your stories to that of others? This is one of the drawbacks of joining an online community. You take the good with the bad and the ugly. So how can you protect yourself on Facebook?

If you are in feeling sad or anxious, perhaps choosing not to log in or only logging in to read your private message may be a good strategy. Or you might consider a Facebook break, and give the groups time to cool down and then jump back in when you are feeling stronger and wish to reconnect with others who are affected by mesothelioma.

There are many who feel the need to share, share and share again, and others who wish to maintain their privacy and participate on a limited basis. Some friend everyone in sight and then get bombarded with messages and feeds, while others judiciously join in and make friends slowly and carefully. Friends can be fleeting on Facebook. You do have the option to “unfriend” someone whose posts are particularly disturbing to you and perhaps send them a simple note as to why you might be unfriending them.

The Foundation is sensitive to the needs of those in the community and wishes to make the Facebook support group experience one that provides accurate information, support and the ability to connect with others.  We will never exploit those in our community and respect your privacy and emotional well-being.  Please contact any staff members with suggestions, comments, or even criticism. That is how we learn how best to care for our community.

Response to the Wall Street Journal Article “For One Asbestos Victim, Justice Is a Moving Target”

McQueensOn Monday, June 17, the Wall Street Journal Published the article “For One Asbestos Victim, Justice Is a Moving Target,” about Bill and Karen McQueen. Bill and Karen have been friends of the Foundation throughout Bill’s diagnosis and treatment, and we were deeply saddened by Bill’s recent passing.

What follows is the response submitted to the Wall Street Journal from the Meso Foundation’s executive director Mary Hesdorffer, Nurse Practitioner.

Words cannot express the suffering that a diagnosis of mesothelioma inflicts upon a family. The McQueen family contacted us early in their struggle and together we researched their best options and provided support and guidance during their journey. The litigation issue is complex, and certainly outside of my area of expertise but I would like to refocus your attention on the lack of effective treatments to stop this disease in its tracks. Mesothelioma is acquired through exposure to asbestos. There is no disputing this. What we do not know is how to prevent this disease, or how to pick it up in its earliest stages when it might be more amendable to treatment. The Mesothelioma Applied Research Foundation (curemeso.org) focuses its energies on funding peer-reviewed research (grants totaling over $8.2 million to date) projects which focus on prevention, early detection, and treatment, as well as basic science, as there is much we have yet to learn about the natural history of mesothelioma. 

The Meso Foundation looks forward to the day when a full ban on asbestos will be inacted by the United States government. However, the Foundation also understands that no law can remove all asbestos from the environment, including asbestos naturally present in the ground, or asbestos present in the attics of over 30 million homes in the United States. Given the long latency period between exposure and disease development, even if a complete ban were inacted today, thousands of Americans would still be at risk for mesothelioma. For all those who have been exposed in the past and will be exposed in the future, research to find better treatments and a cure for mesothelioma is the only way to ensure that asbestos becomes less dangerous and less deadly.”

If you are passionate about raising mesothelioma awareness, join our cause today. Help make a difference in mesothelioma research and treatment by showing your support. Join our cause now.