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September 2011 Archives : Myeloma Voices

9/11 and Myeloma

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bdurieblogpicture.jpgThis Sunday marks the 10th anniversary of the 9/11 attacks on the World Trade Center towers in New York. Among the casualties sustained that day, were a number of first responders who, instead of running away from dangerous ash clouds that enveloped the streets of Manhattan, ran toward them in the hopes that they would be able to help save lives. This country owes a debt of gratitude to these heroes, who put their own lives on the line to help others. 

But all the gratitude in the world isn't going to cover the high costs of fighting the battle against cancers like multiple myeloma. Apparently, neither is the U.S. Government, which despite having enacted the $4.3 billion James Zadroga 9/11 Health and Compensation Act, has denied claims that toxic exposure from 9/11 attacks has any correlation to the increased rates of cancer appearing in the men and women who were directly exposed to the toxic environment surrounding the fallen towers in the aftermath of the tragedy.

I respectfully disagree.

Dr. Philip J Landrigan, head of a Sept 11th treatment, monitoring, and research program at Mt. Sinai Medical Center, said in the NY Times that "we know full well that the responders were exposed to a whole soup of carcinogens." Carcinogens are chemicals known to cause cancer including myeloma, chemicals like those found in Agent Orange. As the direct link to multiple myeloma has been studied and established, the Veteran's Administration now fully compensates myeloma patients who were exposed to Agent Orange during the Vietnam War.

I believe the direct link between the "carcinogenic soup" that the first-responders were exposed to during 9/11 has also been established. We already know there was exposure to cancer causing chemicals at the World Trade Center. The levels of chemicals were measured in the blood and tissues of first responders, and a report detailing the findings in seven patients with myeloma was published just last year. Since then, even more cases have been discovered.

A New York City fireman calls for 10 more resc...

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There are three papers published in the British journal The Lancet on September 1, 2011 evaluating nearly 10,000 male fire department personnel. The study affirms the toxic impact of the 9/11 exposures and the increased occurrence of lung problems, as well as a range of other medical problems including cancer. There is a specific increase in non-Hodgkin's lymphomas, a blood cancer similar to myeloma, which is also linked to the same causative factors. For myeloma, a rarer cancer, the numbers are currently small. Unfortunately, myeloma has been occurring in not just men but also in young women (which is very unusual for myeloma) who were first responders, but that data was not included in the recent Lancet publications.

I believe the case has been made. Representatives Carolyn Maloney, Jerrold Nadler, and Peter King, authors of the James Zadroga 9/11 Health and Compensation Act, also believe the case has been made. It took the emphatic support of Admiral Zumwalt, whose son developed lymphoma after service in Vietnam, to push through legislation to compensate Vietnam Veterans exposed to Agent Orange. 

As Americans, we need to speak up on behalf of the brave men and women who heroically displayed the true American spirit by responding during a crisis a decade ago. I call upon not just the myeloma community, but also our entire nation, to demand justice for our men and women in civil service. We need to push for expanded coverage for cancer through the James Zadroga 9/11 Health and Compensation Act. If you want to help, contact the IMF Advocacy team at advocacy@myeloma.org.

bdurieblogpicture.jpgLast weekend, the IMF held our fourth and final Patient & Family Seminar of the year in Philadelphia, PA. We had an uninvited guest make her presence known in the form of Hurricane Irene. As they say, "necessity is the mother of invention," so we came up with an abbreviated schedule with the intention of ending early and getting everyone on their way home before the storm hit.

So, yes, we did end up with a smaller and shorter seminar than had originally been expected, but something rather large came out of it anyway. During the Friday night dinner, the Philadelphia Multiple Myeloma Networking Group presented a $48,000 check to the IMF from the proceeds of their 3rd Annual Miles for Myeloma 5K fundraiser. This brings the total amount raised by this annual event to $200,000 toward research programs for the IMF!

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In addition to the check presentation, the Philadelphia group announced that they had recognized a local doctor, Dr. Dan Vogl, with the "Brian Durie Humanitarian Award" earlier this year. I am honored that the group has decided to continue recognizing people who make a great impact on the lives of myeloma patients in their area. Dr. Vogl cares so deeply for his patients that he has voluntarily undergone a bone marrow biopsy so that he could experience what his patients feel firsthand.

At this point in the program, Susie Novis spoke about the IMF's Brian D. Novis Research Program, which awards grants of $50,000 or $100,000 to Junior and Senior level investigators in the field of myeloma research. Over the years, the IMF has awarded more than $4 million to these research projects, and many have gone one to receive further funding from other prestigious institutions. 

The 2011 deadline for the Brian D. Novis Grant applications was on August 1st, and we at the IMF were pleased to see that the program's reputation had grown to the point that we had more qualified applications than we have ever received in IMF's history!

We want to respond to this increase in applications by increasing the amount we can award this year. Susie began by pledging $1,000 to fund an IMF research grant. Andrew Kuzneski then spoke up and pledged $2,500. Then, from across the room, somebody spoke up and pledged $3,500!

The pledging continued until Doug Farrell stood up and offered to pledge $500 if we allowed him to sing.  Earlier in the evening, we had mentioned the Farrell's annual "A Song For Ireland" fundraiser which has become quite successful over the years. We always welcome a chance to hear him sing in person, and he did not disappoint. Doug led a rousing sing-along rendition of "High Hopes" which ended in a fabulous round of applause.

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It happened rather quickly, but we tallied that more than $10,000 was pledged that night. Along with the Philadelphia Networking Group's check presentation of $48,000, we were well on our way to funding a Senior level grant!

Despite the weather, the cancelled flights, and the east-coast evacuations, the IMF was able to hold a slightly altered but still very informative seminar in Philadelphia this year. For those who were able to make it there, we thank you for your understanding and patience as we all scrambled away to catch the last flights out of the airport before they shut down. For those who were unable to attend because of the hurricane, we hope that you will consider applying your registration fee to one of our four seminars coming up in 2011.

And to those who not only made it to the seminar, but also stood up to make a contribution, thank you for helping us do our best to find the cure for myeloma.

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If you would like to make a contribution to the IMF's research program, click here, or call the main office at 800-452-CURE.

Looking for the Cure

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I've posted a blog about our experiences with hurricane Irene and the P&F Seminar:t.co/kVuHeRl