Meet the Mesothelioma Experts: Defactinib, a New Investigational Agent for Mesothelioma

command1On April 8 at 9 PM Eastern time, the Mesothelioma Applied Research Foundation (Meso Foundation) will hold a new installment of its ‘Meet the Experts’ series, featuring Dr. Joanna C. Horobin, the Chief Medical Officer at Verastem, Inc., who will discuss the company’s latest investigational agent, defactinib, which is being developed for use in patients with pleural mesothelioma. Those interested in attending via telephone can RSVP by visiting http://www.curemeso.org/experts.

Dr. Horobin will be interviewed by Mary Hesdorffer, Meso Foundation’s executive director and experienced nurse practitioner. The goal of this “Meet the Experts” installment is to learn more about this novel agent, the purpose of which is to delay the time to progression after having a response or stabilization with first-line therapy. Currently, defactinib is available only through its clinical trial.

Dr. Horobin, M.B., Ch.B. has been the Chief Medical Officer at Verastem, Inc. since October 2012.

The Meet the Experts series is a live podcast created by the Meso Foundation with the goal of providing patients, their family members, and other interested parties with the most up-to-date information on mesothelioma treatment and research, directly from the physicians pioneering these advances. Past teleconferences have featured:

Dr. Lee Krug – Memorial Sloan-Kettering Cancer Center
Dr. Dan Sterman – University of Pennsylvania
Dr. Raffit Hassan – National Cancer Institute
Dr. Julie Brahmer – Johns Hopkins
Dr. Tobias Peikert – Mayo Clinic
Dr. Joseph Friedberg – University of Pennsylvania
Dr. Valerie Rusch – Memorial Sloan-Kettering Cancer Center
Melissa Culligan, RN – University of Pennsylvania

The topics, which have included immunotherapy, gene therapy, drugs, clinical trials, and biomarkers, are usually discussed through an informal interview, focusing on questions important to patients, in particular. Listeners are encouraged to ask questions while listening to the call.

Stay Tuned this Fall for Three Regional Conferences on Mesothelioma

conferenceFollowing the successful conclusion of its annual Symposium, the Mesothelioma Applied Research Foundation (Meso Foundation) announced that later this year it will be the host of three regional conferences in Philadelphia, Chicago, and San Francisco, for mesothelioma patients, their families, and others interested in learning about the most up-to-date information on mesothelioma treatment. In a cancer like mesothelioma, for which patients generally must travel far and often just to consult with experts, the ability to meet mesothelioma specialists, listen to their talks, and engage with them one-on-one, without leaving the conference venue, is unique , but also of utmost importance.

“Informed and knowledgeable patients generally can make better decisions regarding their treatment and care than those unaware of all options, side-effects, and other considerations,” said Mary Hesdorffer, experienced nurse practitioner and executive director of the Meso Foundation.

The three conferences, organized in conjunction with the University of Pennsylvania, University of Chicago, and the University of California San Francisco, are meant to provide patients across the country with similar, albeit condensed, benefits of the organization’s annual Symposium (expert presentations, support sessions, socialization with peers and experts), but with less travel and with only a one-day commitment.

The conferences will be scheduled as follows and more information will be made available a thttp://www.curemeso.org. The Foundation encourages everyone interested to sign up for its e-newsletter, through which it will make detailed conference information, including dates, available in the next few months.

September – at the University of Pennsylvania (Philadelphia)
October – at the University of Chicago (Chicago)
November – at the University of California San Francisco (San Francisco)

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.