Asbestos Awareness Week: Counteracting Decades of Damage with Research?

AsbestosAwarenessWeek2014During the first week of April, the Mesothelioma Applied Research Foundation (Meso Foundation) will observe Asbestos Awareness Week while raising awareness of the deep damage inflicted by asbestos’ use and the overdue need for life-saving treatments and a cure for those who have already developed, or who will develop, mesothelioma. Mesothelioma is a cancer known to be caused by exposure to asbestos. The latency period between asbestos exposure and development of mesothelioma ranges between 20 – 50 years, meaning that patients of today were exposed decades ago, but also that patients of tomorrow have likely already been exposed.

Medical experts consider mesothelioma as one of the most aggressive and deadly of all cancers. With a 5-year survival rate in the single digits, mesothelioma currently has no cure. Approximately 3,500 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed while serving in the Navy or working in shipyards.

Asbestos, a catch-all term to describe a group of naturally-occurring mineral fibers, was used in construction for decades. Workers in a number of industries and occupations were regularly exposed to high amounts of asbestos fibers. Although, the United States has placed heavy regulations on its use, asbestos has still not been completely banned and continues to be used.

Today, the Environmental Protection Agency (EPA) estimates that asbestos is still present in tens of millions of homes, government buildings, schools, etc. Asbestos has also been found naturally-occurring in the soil in several locations in the United States, sometimes in very close proximity to inhabited areas. When disturbed, asbestos particles become airborne and are easily inhaled. Scientists have identified that no amount of exposure is safe.

“Unfortunately, asbestos’ prevalence has put all of us at risk,” said Mary Hesdorffer, nurse practitioner and executive director of the Meso Foundation.

“Given the extremely long latency period for developing mesothelioma, for thousands of Americans, the damage has already been done — the asbestos has been inhaled. Now it is our responsibility to invest in prevention research and to make sure that if they develop mesothelioma, life-saving treatments and a cure are waiting for them,” added Ms. Hesdorffer.

The Meso Foundation is the only non-government funder of peer-reviewed scientific research focused on prevention, early detection, development of effective treatments, and, ultimately, a cure for this extremely aggressive cancer. To date, the Foundation has awarded over $8.7 million to research. More information is available at http://www.curemeso.org.

Thank You from Mary Hesdorffer

Mary Hesdorfferby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

It feels like a time warp as we move from project to project, one day blending into the next. We are deeply immersed in planning three regional conferences before this year ends, and projecting what is in store for us in 2015.

I would like to take this opportunity to personally thank all of those who participated in our 2014 Symposium, which took place in early March. It is so important that we gather together to address the individual and global needs of the mesothelioma community. Weren’t our doctors amazing? I was so grateful that they came out in large numbers to support us and to impart valuable knowledge and support to those in need.

I would also like to thank the individual members of the staff who made the conference appear so effortless.

Erin Maas was responsible for the site location and all of the logistics that go along with running a conference. Thank you, Erin, for a job well done.

Maja Belamaric and Beth Posocco were in charge of communications and marketing the conference, work that is not always visible to the public. The live stream attracted nearly 600 viewers thanks to their tireless efforts to ensure that it was properly managed and advertised.

Erica Ruble was the unofficial hostess of the event making sure that everyone was welcomed and warmly introduced to others. Her fundraising knowledge and encouragement to others has helped us to grow exponentially.

Dana Purcell was responsible for planning many of the supportive care and fundraising sessions. I think we can all testify to a job well done and we look forward to her continued work on community events and individual fundraisers over the upcoming year.

Last but not least is our government affairs director, Jessica Barker. Jessica is well-known on the hill championing our causes and making valuable connections with politicians and government entities to provide our community with a strong voice in Washington. You will see Jessica making her rounds to many political events and she is a sage advisor to both Melinda and me. If you are planning to attend the ADAO conference taking place in Washington, DC in April, please introduce yourself to Jessica as she will be representing the Foundation at this asbestos-focused event. Unfortunately, I will be unable to attend, but I wish Linda Reinstein a successful conference.

Finally, our CEO Melinda is really owed a debt of gratitude for managing the business side of the Foundation and ensuring our financial health so we can remain strong in achieving the goals of our mission. It is a pleasure to work closely with Melinda as she brings her impressive non-profit background into the discussion and helps me to advance the scientific agenda of the Foundation, proving continuously that two heads are better than one!

Keep in close touch with me and let me know your thoughts on how we are doing. Also, we will soon be announcing the date and time for another telephonic town-hall meeting to discuss the future and current state of the Foundation.

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.

Saluting Our Veterans!

flags_veterans2_smallThank You, Veterans!

On this Veterans Day, the Meso Foundation would like to extend a heartfelt “thank you” to all those who have generously and selflessly served this country in our various branches of the military. We appreciate and admire your service!

At the Meso Foundation, our work on behalf of veterans affected by mesothelioma today, and those who will develop mesothelioma in the future, spans throughout the year. We work to ensure that mesothelioma, a cancer prevalent among veterans, is not ignored by our country’s elected officials and our government.

In fact, as a direct result of continued advocacy by the Mesothelioma Applied Research Foundation, the Department of Defense has funded a total of $8.8 million in mesothelioma research since 2008. We are currently looking to expand this program to include a category dedicated exclusively to mesothelioma, so that meso researchers would no longer need to compete against other diseases for funding.

Beyond our advocacy for research dollars and our own research funding to which we’ve invested over $8.2 million, the Meso Foundation is dedicated to helping mesothelioma patients, including our service men and women, by providing them with support services and education they need to fight this cancer. We understand that veterans may have specific needs, therefore, on our website, we have compiled important information and resources specific to this group.

Military veterans, along with other occupations leading to asbestos exposures, are at a high risk for developing mesothelioma. A 2002 study of asbestos exposures that led to mesothelioma found that a large number of total mesothelioma cases, approximately 1/3, were caused by either service in the Navy or occupations within the shipbuilding industry. Over 1 in 10 mesothelioma patients are Navy veterans.

Message from IASLC

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

IASLC

Mary and Melinda made it to the cover of the IASLC conference daily newspaper!

Melinda and I are currently attending the International Association for the Study of Lung Cancer (IASLC) and I am so pleased to report that interest in mesothelioma research is exploding.  Professor Bruce Robinson hosted a one day event in the day preceding the conference to gather all the experts in one room to present and discuss where we are headed in mesothelioma research.  We were given an insight into some of the sessions that were to be presented at the larger meeting and an opportunity was provided to discuss them in detail in a small focused working session.  Many of the presenters were past Mesothelioma Applied Research grant recipients and we were proud to see their work progressing.  Professor Robinson, then, hosted the group for an evening of drinks and dinner where networking and further discussion of topics pertaining to mesothelioma were explored.  We are so grateful to Professor Robinson for inviting us to be part of the meeting as well as the evening socialization.  He is a fantastic host, an amazing humanitarian and brilliant researcher.  When I return home expect to see updates and breaking news from this meeting.

Final tally from this important conference:

Delegates: 5,340
Countries Represented: 97
Talks on Mesothelioma: 47