Message from IASLC

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


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

Meso Foundation Participates in Prestigious Conference on Lung Cancer

IASLCOn October 27 – 30, Mary Hesdorffer, the executive director of the Mesothelioma Applied Research Foundation (Meso Foundation), and Melinda Kotzian, the chief executive officer of the Meso Foundation, are scheduled to attend and participate in the 15th World Conference on Lung Cancer  in Sydney, Australia, organized by the International Association for the Study of Lung Cancer (IASLC).

They will be representing the Mesothelioma Applied Research Foundation and will be raising awareness of mesothelioma amidst over 7,000 delegates from over 100 countries.

In her capacity as a nurse practitioner and an expert in mesothelioma treatment and care, Mary is scheduled to speak at several sessions, including one on the use of social media networks to communicate with and provide support to mesothelioma patients. Mary is a viewed as a pioneer in this area. As a speaker, Mary’s travel and lodging costs are entirely covered by IASLC.

Melinda’s travel costs are also covered through a grant by IASLC for which she applied earlier this year. She was one of five grant recipients from all over the world awarded travel grants to enable them to attend this important event.

The Meso Foundation will also be hosting a booth with information about mesothelioma and programs and services provided by the Foundation.

2014 Symposium: Registration is Now Open!

2014_Brochure_CoverOn March 5-7, 2014, join us in the Washington DC area, for three days of advocacy, science and community. The 2014 International Symposium on Malignant Mesothelioma will explore the barriers and obstacles faced by people affected by mesothelioma, be it related to treatment, research, or patient and family care, and ways to get through them (or, sometimes, around them). Learn more about this year’s conference. 

Now that we’re back in the DC area, this conference will once again include an advocacy component that will allow everyone to meet with their Congressional representatives. The two days that follow will be packed with presentations by world-renowned mesothelioma medical professionals, who will share their most up-to-date studies and information with attendees.

As always, the community will play an integral part in this event. We plan on hosting some formal community sessions, but as you requested through surveys, we will also provide plenty of opportunities for organic socialization. On the heels of last year’s success, the Meso Fighters Band, a band of musically-inclined community members, has begun reunion plans and will have something special in store for us.

Don’t miss this one-of-a-kind opportunity to learn, advocate, find and offer support, and connect. Register today and join us as we break through barriers toward better treatments and a cure for mesothelioma.


BREAKING NEWS: SS1P Clinical Trial Results Published

Raffit_hassanToday, the Science Translational Medicine journal published the article “Major Cancer Regressions in Mesothelioma After Treatment with an Anti-Mesothelin Immunotoxin and Immune Suppression” by Dr. Raffit Hassan of the NCI, former chair and current member of the Meso Foundation’s Science Advisory Board.

Dr. Hassan explains:

Very few treatment options exist for patients with mesothelioma who have failed chemotherapy. In this months issue of Science Translational Medicine scientists from the National Cancer Institute report a promising treatment that may benefit some patients with mesothelioma. This treatment involves an immunotoxin (which consists of an antibody linked to a potent toxin) SS1P developed in Dr. Ira Pastan’s lab at the NCI, that targets the protein mesothelin present on mesothelioma cells. In previous trials SS1P had limited activity since most patients developed antibodies against the drug. However, in the current study, led by Dr. Raffit Hassan at the NCI, using two other drugs, pentostatin and cytoxan, which suppress part of the immune system, they were able to give patients more doses of SS1P. Out of the 10 evaluable patients treated 3 patients had significant tumor shrinkage and all three patients are alive more than 18 months after starting therapy. In addition, 2 patients who had previously progressed on chemotherapy had a tumor response when treated with chemotherapy following SS1P. Although a small study, these responses in patients who had advanced treatment refractory disease are encouraging and the investigators plan to conduct a larger study to validate these results.

The abstract of the study can be found here. The article was also followed by an editorial by Dr. Ravi Salgia and Dr. Martin Sattler: Sci Transl Med-2013-Salgia-208fs38.

For more information, please contact Mary Hesdorffer, Nurse Practitioner at, (703) 879-3820, or use our Ask the Expert feature to get answers to your questions.

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

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.