Get Ready for Meso Awareness Day 2014

Mesothelioma Awareness Day 2014 will be observed on September 26th.Mesothelioma Awareness Day is just around the corner on September 26th! Established by Meso Foundation volunteers in 2004, Meso Awareness Day has been the driving force behind the movement to bring more attention and funding to this cancer. In the last ten years, through various activities, the Meso Foundation and its volunteers have been able to obtain “National Mesothelioma Awareness Day” proclamations by both the U. S. Senate and the House of Representatives, have raised nearly a million dollars, have received local government proclamations in their states and localities, and have received dozens of instances of media coverage for their stories, events, and activities.

In 2014, help us continue this trend. There are a number of ways that you can get involved, such as:

GOVERNMENT: Make Mesothelioma Awareness Day an official day in the states and cities where this hasn’t yet happened.

FUNDRAISING: Organize/attend a fundraising event. Visit curemeso.org to view upcoming events or explore the many ways you can get involved and plan your own event.

MEDIA COVERAGE: Contact your local media to obtain coverage of Meso Awareness Day in your area.

GENERAL AWARENESS: Use your social media networks to bring attention to mesothelioma and to educate your friends, families, and communities about our mission to eradicate mesothelioma and end the suffering caused by this cancer.

CONFERENCE: Join the Meso Foundation at the University of Pennsylvania in Philadelphia for a regional conference with experts in the field of mesothelioma. The conference will take place on Friday, September 26 at The Hub, Cira Centre located at 2929 Arch Street, Philadelphia, PA 19104.

TODAY SHOW: If you are in the New York are, join Meso Foundation volunteers as they again gather at Rockefeller Plaza in New York City for the Today Show on the morning of Friday, September 26. RSVP NOW. Check out the video below from Meso Awareness Day 2012!

More information about Mesothelioma Awareness Day is available on our website at curemeso.org/awarenessday.

Volunteers Needed: Meso Foundation’s Water Stop at NYC Marathon

The Meso Foundation will have an official water stop at the 2014 New York City Marathon and is looking for volunteers.This year, the Mesothelioma Applied Research Foundation has an opportunity to staff the water stop at Mile 19 of the New York City Marathon. This is an official water stop of the marathon and is a tremendous opportunity to raise awareness of our cause at such a world-famous event. This event features over 50,000 runners, and over 2 million spectators.

The marathon will take place on Sunday, November 2, and the volunteers are expected to be there between the hours of 7:30 AM – 3:30 PM.

Due to planning and security concerns, all interested volunteers must register online by July 31, 2014. No walk-ups are allowed.

If you are unable to volunteer, but still wish to participate in this event, you can give to the NYC Marathon water stop fundraising page curemeso.org/fundraising/nycmarathon.

The registration process outlined below requires several steps, so if you need help registering, please contact dpurcell@curemeso.org.

STEPS TO REGISTERING AS A VOLUNTEER FOR THE NYC MARATHON

If you are ready to VOLUNTEER for the 2014 TCS New York City Marathon, FOLLOW THE STEPS BELLOW:

1)    Follow the link https://mynyrr.nyrr.org/login and register with New York Road Runners (NYRR). 

If you need additional registration help, visit: http://www.nyrr.org/my-nyrr-getting-started

2)    Once you register, you will receive a confirmation email. Please follow the link in the email to finish setting up your account. (Can’t find the confirmation email? Check your spam folder!  Have Gmail?  Look in your promotions folder!

3)    Now, log in to your account and from the main page select VOLUNTEER, and select the area you’d like to volunteer in.

4)    Scroll to the volunteering event of your choice and select the radio dial to the left. Scroll down the page and click NEXT.

5)    Complete the missing information and click ACCEPT AND VOLUNTEER

Once you complete all the steps, you’ll receive a confirmation email from NYRR.

During the week leading up to the race, you’ll receive specific information about your assignment, and about what will happen on race day.

Have You Been Seeing Fewer Posts from the Meso Foundation in your Facebook Feed?

Meso Facebook LikeIn recent years, social media has become a valuable tool used to assist nonprofit organizations in raising awareness of their cause and programs. The Meso Foundation has been taking advantage of a number of platforms for this purpose, and is currently present on Facebook, Twitter, and YouTube. We use these social networks to connect with our community, provide news and information, promote upcoming events, fundraise, and simply to discuss mesothelioma and raise awareness of this cancer. We have found that Facebook, in particular, is an ideal social media tool for our purposes, and we have been using it extensively.

However, as a business, Facebook is focused on making money.  Recently, in an effort to do just that, Facebook engineers have made changes to the way posts are displayed on your news feed. Just a few months ago, those of you following our Facebook page would see our posts regularly. Now, however, Facebook shows our posts to only about 10% of you. The goal for Facebook is to increase the amount of money they make from organizations using paid advertisements. As a nonprofit organization, we don’t have the luxury of spending much money to promote information that should be accessible to you for free, and for this reason, we need your help!

In order to give our posts more visibility, Facebook wants to see first that our content is interesting. This is gauged by the number of likes, comments, and shares a post receives. So here’s how you can help out:

  • Interact with us! If you see a post that interests you, click “like” and leave us a comment.
  • If you think your own network of friends will like the post, share it.

Not only will this allow us to hear your thoughts and opinions, but it will give our content more play by telling Facebook that our posts should be released to more of our followers. The more you interact with our posts, the more people will see them.

To break it down, here’s an example: The Meso Foundation posts an article from our blog on Facebook, and it is seen by about 200 people. If each of those 200 people like, share, or comment on the post, it will be seen by the friends of each person! This gives our content a much larger reach, and in turn, gets the word out about mesothelioma.

Through social media, we are given the opportunity to directly connect with our community members. We want to hear your questions, comments, concerns, and thoughts on the content we post. Even if you have nothing to say, a simple like or share will go a long way in getting our content out there to more people. Through these efforts, we hope to raise mesothelioma awareness while building an online community dedicated to the mission of developing effective treatment and a cure for mesothelioma patients.

If you haven’t already, be sure to like the Meso Foundation on Facebook and follow us on Twitter.

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

Meso Awareness Day

This year’s Meso Awareness Day is creating much needed meso awareness thanks to you, the meso community.  The Meso Foundation was fortunate to be invited to our City Hall to receive the proclamation of September 26th as Meso Awareness Day from our Mayor and City Council.  After the Mayor read the proclamation, Chris was permitted to say a few more words about the Foundation and why we are here.  He thanked our local government for joining with the meso community to raise awareness at home and how that information translates to awareness throughout the nation.

Sharing our stories and experiences helps educate the many mis-informed people about the dangers of asbestos and the necessity of commiting research funds to create better treatments and a cure for meso. Many of you have been effectively creative in your thoughts on  how to raise meso awareness.  I’ve joined multiple groups on social networks who are spreading the word to others about the disease.  In addition to many of you connecting to others online,  I’ve heard of  some of you making posters, t-shirts and buttons to observe and share our experience with meso; all of which are great ideas.

Many of us have asked our government to recognize mesothelioma on Meso Awareness Day by issuing its official proclamation on September 26th. The following is a list of some of the proclamations sent to the Foundation:

Pennsylvania- Yearly proclamation of recognition for September 26th as Meso Awareness Day by Governor Ed Rendell.  This has been issued annually since 2003.

Kentucky- Resolution proclaming Meso Awareness Day on September 26th by Governor Yvonne Hall.

Michigan- Resolution proclaming Meso Awareness Day on September 26th by Governor Wendy Martin.

Illinois- Executive Department proclamation for September 26th, 2008 as Meso Awareness Day issued by Governor Blagovich.

Georgia- Proclamation of Meso Awareness Day on September 26th issued by Governor Sonny Purdue.

Vermont- Proclamation of Meso Awareness Day on September 26th issued by Governor James H. Douglas.

Rockland County, New York- Meso Awareness Day Proclamation for September 26th from the Honorable Harriet D. Cornell.

Roselle Park, NJ- Declaring September 26th as Meso Awareness Day.

Santa Barbara, CA- Issued proclamation of Meso Awareness Day on September 26th, 2008 by Mayor Marty Blum

Please contact me if you would like to add to this list as well as for any other questions on how we can use our stories to educate our lawmakers and obtain the much needed attention and resources from our government.

Today, as we listen to Warren Zevon and sport our Meso Awareness gear we unite in the fight and pledge to continue our efforts throughout the year.

Thank you all for your hard work and hope!

Believing,
~Jeni