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

Recapping the US Conference on Rare Diseases and Orphan Products

Meso Supporters

NORD reminds us that strength is in numbers. Increase our numbers by joining our mission at curemeso.org.

by Beth Posocco, Communications Associate, Mesothelioma Applied Research Foundation

A few weeks ago, I had the chance to attend two days of the third annual US Conference on Rare Diseases and Orphan Products in Bethesda, Maryland. The conference organized by NORD and DIA was broken up into four major themes: Research and Regulation, Access and Reimbursement, the Role of The Patient in the Research and Regulatory Process, and The Implementation of the Affordable Care Act. Attendees included doctors, patients, and professionals in the rare diseases field.

On Tuesday, October 8, the US Conference on Rare Diseases began with an overview of NORD, the National Organization for Rare Disorders. NORD was formed in 1983 as an independent charity to mobilize support for the passage of the Orphan Drug Act. Today, NORD is made up of 35 individuals with 3 offices located in Connecticut, Boston, and Washington, DC. The organization is made up of programs including research, advocacy, patient/family support, and education.

The first session of the day emphasized the importance of natural history studies in rare diseases. This involves tracking the natural progression of a rare disease. The study of the progression will allow for an enhanced understanding of the rare disease and the advancement of drug development. Natural history studies can also improve rare disease diagnoses, expand the definitions of the diseases, and help identify biomarkers.

Among the first to speak was Dr. Marshall Summar, Chief, Division of Genetics and Metabolism at the Children’s National Medical Center. Dr. Summar has worked in the field of genetics and rare diseases since the 1980s and currently operates the largest clinical genetics program in the United States with 7,000 patients per year. Dr. Summar provided an excellent overview of rare diseases and why they are important. As he noted, there are currently over 7,300 rare diseases listed by NIH that affect 20 to 30 million Americans, or 8-10% of the population.

Dr. Summar noted that as the field of rare diseases gains popularity, more and more people are surviving. To quote Dr. Summar, “There is a tsunami of rare disease patients entering adulthood.” This is a direct result of increased and advancing research. On the topic of research, Dr. Summar stressed the importance in studying rare diseases. He pointed out the fact that rare disease research continuously impacts common conditions. Lessons learned from rare diseases are often applicable to common conditions affecting the general public.

In an afternoon session titled “Patients and Industry: Partnership and Collaboration in Research Funding and FDA Review,” I had the pleasure of listening to a presentation given by Steven Roberds of the Tuberous Sclerosis Alliance (TS Alliance). The TS Alliance was founded in 1974 with the goal of finding a cure for TS through research sponsorship, support programs, education, and more. Tuberous Sclerosis Complex, or TSC, is a rare genetic disorder occurring in approximately 1 in 6,000 live births, 50,000 Americans, and 1 million people worldwide. A TSC patient characteristically suffers from the growth of tumors within the body, but no two patients are affected the same way. TSC is also a leading genetic cause of autism and epilepsy.

The TS Alliance initiated a Natural History Database in 2006 as an attempt to better understand the disease and how it naturally progresses in patients. Data is gathered from 15 of the 40 TSC clinics in the United States, and the database is an available resource to researchers. The data within this custom, web-based repository is constantly updated and retrospective. Since its launch, the Natural History Database has grown significantly and there has been an improvement in disease awareness and earlier diagnosis. To improve the database further, TS Alliance joined forces with Novartis Pharmaceutical Company. Novartis provides funding for the database, while TS Alliance continues to own all of the data.

Christine Brown of the National PKU Alliance (NPKUA) kicked off the session titled “Assuring Patient Access to Treatments.” NPKUA was formed in 2008 with the main goal of creating a centralized research program and ultimately finding a cure for phenylketonuria (PKU). NIH describes PKU as “a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine. With the introduction of newborn screening fifty years ago, PKU became easier to detect earlier and treatment has advanced greatly.

Assuring PKU treatment continues in patients throughout their lives is a goal of NPKUA. The majority of infants receive treatment, but the number of patients who remain in clinics decreases over time. More than 70% of PKU patients aged 35-40 are not present in clinics. Despite being treated as a child, PKU can still cause major health issues if treatment is discontinued later in life. One issue often seen is the limited amount of adult PKU clinics. Many adult PKU patients are seen in pediatric settings.

The treatment for PKU is a strict diet of medical foods. The only natural foods able to be processed by PKU patients are fruits and vegetables. To make up for the lack of nutrition available, patients must eat a diet of modified low protein medical foods. This diet costs ~$8,000 per year and is often not covered by insurance despite being considered medical treatment by the FDA.

Wednesday, October 9, began with a presentation titled “Payment Reform Activities and their Relations with Rare Diseases and Orphan Products” by William Shrank, MD MSHS, of the Division of Pharmacoepidemiology and Pharmacoeconomics at Harvard Medical School and Brigham Women’s Hospital. Dr. Shrank provided an overview of what payment reform within the Affordable Care Act entails. He explained the goal of payment reform: “create a payment approach that awards doctors for high quality care.” Doctors will strive to give the best quality care to patients rather than simply trying to reach a higher quantity of patients.

Dr. Shrank pointed out a common worry when applying payment reform to rare diseases: will doctors avoid patients with rare diseases because they require more attention and specialized care? This worry was put to rest as Dr. Shrank explained that striving for better quality will actually eliminate the possibility of rare disease patients falling through the cracks. Because of better care coordination, rare diseases will benefit, as they require multiple doctors and specialists.

The second session of the day, “Collaboration from Bench to Bedside: How Industry and Patients Can Partner in Rare Diseases,” consisted of a panel of four: Robert Beall, President and CEO of Cystic Fibrosis Foundation, Robi Blumenstein, President of the CHDI Foundation, John Bournas, CEO and Executive Director of the World Federation of Hemophilia, and Dian Goetz, Senior Director, Patient and Professional Advocacy at PTC Therapeutics. The panel discussed the best ways to avoid pitfalls and ensure successful industry collaborations.

Beall stressed that successful strategic alignment in collaboration is best achieved through constant dialogue. Blumenstein built on this idea by explaining that patients and industry must understand what one another cares about rather than telling one another what they should care about. Input from Bournas suggested trust and confidence are just as important as communication. Goetz took a similar stance while also stressing the importance of keeping industry up to date.

The panel moved on to discuss avoiding pitfalls in the process. On the subject of patient/industry collaboration, Beall simply stated, “It’s not for the faint of heart.” It is important to recognize that disappointments are unavoidable. The panel unanimously agreed that patience is key, as the collaboration process takes a very long time.

The US Conference on Rare Diseases and Orphan Products closed with a look at the next 30 years within the field. NORD expressed their goals to continue as “the voice of rare disease patients.” As more rare diseases are discovered, NORD will continue to build organizations to support them. Overall, the field of rare diseases is gaining popularity and research is advancing.


Beth PosoccoBeth Posocco began working with the Meso Foundation in July of 2013. As a Communications Associate, Beth’s work encompasses marketing, social media strategy, blogging, mass emailing, website maintenance, SEO, and design. With her creative nature and marketing education, Beth’s goal is to grow our online community and strengthen our relationships with those affected by mesothelioma.

Beth was born and raised in Scranton, Pennsylvania. She completed her undergraduate degree at the University of Scranton in 2011 with a BS in Media and Information Technology. She is currently pursuing an MBA with a graduate certificate in Social Media Marketing from Southern New Hampshire University. Previously, Beth has interned and worked with multiple nonprofit organizations in both Pennsylvania and the Washington, DC area.