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.”

Mesothelioma Mobilization in Britain

Mary and the Lord Mayor of Birmingham

Lord Mayor of Birmingham, Cllr Mike Leddy and Mary Hesdorffer, NP Executive Director of the Meso Foundation

by Laurie Kazan-Allen

The publication of an article entitled “Mesothelioma – The British Disease” in mid-June, 2013 set the tone for a summer of legislative, political, and public mobilization on asbestos. As groups representing asbestos victims lobbied politicians over the unfairness of provisions in the Mesothelioma Bill, members of the House of Lords tabled amendments to address the woeful lack of British funding for mesothelioma research. Lord Alton proposed that a levy be imposed on the insurance industry to fund medical research into mesothelioma; unfortunately, this amendment was defeated during a heated debate in the House of Lords. After the summer recess, the Bill will go to the House of Commons.

The importance of research funds and a coordinated research strategy were highlighted on July 3, 2013 in a presentation made by Mary Hesdorffer, NP Executive Director of the Mesothelioma Applied Research Foundation (Meso Foundation) to the Parliamentary Asbestos Sub-Group during its annual seminar in the House of Commons. Mary’s participation at this high-level Westminster event was warmly received as was the input by her colleague Dr. Daniel Sterman from the University of Pennsylvania Medical Center. Ms. Hesdorffer, NP and Dr. Sterman were the first American medical experts to take part in this event which has been a fixture of the Parliamentary calendar for well over a decade.

Commenting on her experience, Ms. Hesdorffer said:

“I was delighted to have this opportunity to discuss in Parliament the role of government as well as private sector funding in spurring innovative research to end the suffering caused by mesothelioma. All opportunities to collaborate and confer on the needs of those affected by mesothelioma are most welcome and in light of the increasing number of cases being diagnosed worldwide, we need to explore ways in which we can work more closely together on this global pandemic.”

By good luck and advanced planning, Mary and Dan were able to take part in Action Mesothelioma Day (AMD) events on July 5 in Birmingham and Liverpool. AMD is marked by asbestos victims groups, cancer charities, and civic officials throughout the country and has become a focal point for efforts to raise research funds and public awareness of mesothelioma, a disease killing more than 2,000 British citizens every year. It was a privilege to join Mary in Birmingham for the activities mounted by Asbestos Support West Midlands. The appeal for mesothelioma research funds by the Birmingham group raised £4,500!

Speaking about the day’s events, Doug Jewell, Coordinator of Asbestos Support West Midlands, commented:

“It seemed that Mary and Laurie brought the good weather with them when they came to Birmingham. After the 2012 storms, it was great to be able to be able to mark Action Mesothelioma Day under blue skies. The speakers’ input during the official segment of the program was much appreciated by our friends and colleagues, most of whose lives have been impacted by mesothelioma. There was a great deal of interest in Mary’s discussion of the clinical trials and new drugs being used in the US and UK with many people following up on information she presented in the days after the seminar.”

In the aftermath of AMD, work continues by mesothelioma sufferers and asbestos victims’ groups to raise awareness of a deadly epidemic that shows no signs of abating. Research means hope and it was a message of hope that Mary and Dan so ably transmitted during the time they spent with us in the UK.

About Laurie Kazan-Allen

Ms. Laurie Kazan-Allen has been researching, writing and campaigning on asbestos issues for more than twenty years. The British Asbestos Newsletter, the quarterly publication she founded in 1990, is widely regarded as one of the most authoritative contemporary sources of information by the UK community of asbestos activists. In collaboration with international colleagues, in 1999 she established The International Ban Asbestos Secretariat (IBAS). As the IBAS Coordinator she has organized and/or participated in asbestos events on six continents, amongst the most recent of which was an asbestos hearing at the European Parliament. 

As an adviser to the UK All Party Parliamentary Asbestos Sub-Group, Ms. Kazan-Allen helps organize the annual Parliamentary asbestos seminar. Kazan-Allen has written prolifically about asbestos issues in 85+ issues of the British Asbestos Newsletter and in IBAS publications such as Eternit and the Great Asbestos Trial, Report on the Asian Asbestos Conference 2009, India’s Asbestos Time Bomb and Killing the Future – Asbestos Use in Asia. These and other texts can be accessed at www.britishasbestosnewsletter.org and www.ibasecretariat.org

A Fundraising Campaign is Born

Giveby Erica Ruble, Fundraising Coordinator, Mesothelioma Applied Research Foundation

I lost my hero and father, Lance S. Ruble, to mesothelioma on August 16, 2008. Determined to make a difference and learn more about the disease, I attended my first Symposium in Washington, DC in 2009. It was at this conference that I was inspired by the meso community – specifically by Shelly Kozicki – to begin raising funds for this orphan disease. Shelly had lost her husband Craig to mesothelioma and began fundraising in his memory. I was determined to do the same for my dad.

As I flew back to my hometown, I began brainstorming about raising funds for mesothelioma. Like so many of you out there in our meso community, I had never asked for any type of monetary donation in my life. Even when I was in grade school and we had to sell $1.00 chocolate bars for our school fundraiser, my parents would just buy the whole box. We were always too timid to ask people to make a contribution, but now all of that has changed.

I began my fundraising efforts with a simple letter campaign, putting pen to paper and sharing my dad’s story. I sent this letter to over 250 family members and friends. What I received in return was overwhelming, yet beautiful. The notes and donations came pouring in, and my letter campaign raised over $27,000. A fundraising campaign was born and this was now my new mission in life. To date, our family has raised over $223,000 for mesothelioma research and we are just beginning.

I will be writing monthly about my fundraising efforts. I hope you will join me in this movement to raise funds for mesothelioma. Knowing that there is a family out there who is just like yours and mine is one of the biggest motivations to give back. They are scared, they are not sure what treatment to choose, and most importantly, they want their loved one to LIVE.

We all have a chance in life to give back and help others. This is your opportunity! Whether you are a meso patient, a family member, have lost someone to the disease, or just want to support the cause, I urge you to get involved with fundraising. On a personal level, fundraising has helped me to heal and make sense of my dad’s passing. Of course I still question why this happened, but by giving back and helping others, my dad’s legacy – the man he WAS and STILL IS – lives on.

If you would like to contribute to the efforts of mesothelioma fundraising and raising mesothelioma awareness, you can join our cause. Donate to mesothelioma research today.

The Anatomy of Clinical Trials for Mesothelioma

Recently, we had the honor to interview Melissa Culligan, RN, BSN, MS, a thoracic surgery nurse with specialized experience designing clinical trials. To listen press PLAY in the above podcast box (it may take a minute for the podcast to load).

In a cancer like mesothelioma, for which there is only one FDA-approved treatment, clinical trials play an integral role in many patients’ treatment regimens. For this reason, we wanted to provide patients with a solid overview of clinical trials, their design, and implementation.

Melissa Culligan with Dr. Friedberg, Karen Mudrick, and Mary Hesdorffer at Meso Foundation's 2013 Symposium.

Melissa Culligan with Dr. Friedberg, Karen Mudrick, and Mary Hesdorffer at Meso Foundation’s 2013 Symposium.

Melissa Culligan, RN, BSN, MS has worked as a thoracic surgery nurse for over 25 years and has worked in the field of thoracic oncology research for the past 15 years. She currently works in the Division of Thoracic Surgery at Penn-Presbyterian Medical Center and is the Director of Clinical Services for the Penn Mesothelioma and Pleural Program. She has a special interest in the areas of mesothelioma and advanced stage lung cancer and has recently graduated from Drexel University’s School of Medicine’s Master’s Program in Clinical Research Organization and Management.

Are you interested in learning more about clinical trials for mesothelioma? Do you have questions about mesothelioma clinical trials? Talk to our mesothelioma specialists through our Ask the Expert feature now.