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.

RECAP: Meso Awareness Day

Mesothelioma Awareness Day 2013 was a major success. We had volunteers from across the country represent the Meso Foundation at the Today show in New York City, organize and participate in volunteer events, and join us for our New York Conference and Congressional Briefing. The community raised immense awareness and huge amounts of funds to support mesothelioma research. Below, we recap the successful events surrounding the day.

ROCKEFELLER PLAZA

Today Show Group

Bright and early on Mesothelioma Awareness Day, Meso Foundation staff and community members gathered at Rockefeller Plaza in New York City sporting “curemeso.org” t-shirts for the filming of the Today Show. The turnout was excellent and the group raised immense awareness for the disease and the Meso Foundation.  Rich Mosca had the opportunity to speak with Al Roker about mesothelioma and the Foundation. Another of our volunteers, Marina Mintz, received additional airtime after being chosen for an ambush makeover on the show.

CONGRESSIONAL BRIEFING

Dr. Alexander at Congressional Briefing

Later in the morning on September 26 the Meso Foundation held a congressional briefing at the Rayburn House Office Building on Capitol Hill in Washington, DC. Seventeen Congressional staffers attended the briefing, including some senior staffers. Moderated by Melinda Kotzian, Meso Foundation CEO, the briefing featured presentations from Dr. Rich Alexander, surgical oncologist and clinical research, as well as Lisa Gonneville, a mesothelioma patient. Dr. Alexander discussed the effects of mesothelioma on the body and the research behind the disease. Lisa shared the story of her diagnosis and battle with mesothelioma. Melinda provided insight into the need for research funding.

COMMUNITY DINNER

On the evening of September 26, Meso Foundation staff and volunteers again gathered in New York City for a community dinner at Ted’s Montana Grill. The dinner was hosted by Hanne Mintz, Meso Foundation Board of Directors member. This was a great time for the community to catch up and reflect on their great accomplishments of the day.

SOCIAL MEDIA CAMPAIGN

Mesothelioma Infographic

A social media campaign was launched in recognition of Mesothelioma Awareness Day. The Foundation posted a series of graphics on Facebook. The first of the series told the story of twin sisters, one of whom, Lindsay, was diagnosed with mesothelioma at the age of 20 and continues to battle the disease six years later. The second graphic told the story of Courtney, who lost her father to mesothelioma. The graphics encouraged Facebook viewers to share their story, emphasizing the fact that this disease affects countless individuals. On the morning of Meso Awareness Day, the Foundation launched an infographic explaining the disease and encouraging viewers to share the post to raise awareness. The graphic proved very successful, as it reached over 21,000 viewers on Facebook.

VOLUNTEER EVENTS

Kayaking 4 Meso

During the days and weeks surrounding September 26, twenty-two volunteer events were organized and held all over the nation to raise funds for the mesothelioma research. The events were held throughout many states, including New York, Florida, Ohio, West Virginia, Illinois, Pennsylvania, and so on. Thousands of attendees participated in raising mesothelioma awareness and funds. As donations are still coming in, proceeds from all of the events are being tallied. The total amount of proceeds will be reported in the coming weeks.

Many of our volunteer events were featured in media outlets. Check out the articles below:

RODs Benefit for Meso, an annual event in West Virginia organized by Missy Dorsey Bowles, raised over $25,000 for the Meso Foundation. This was a record-breaking amount for Missy. The event was featured in the following news outlets:

Yvonne Hall and Donna Bruzewski were interviewed by two media outlets in Lexington, Kentucky. Watch the videos listed here:

Evie Lichtenwalter, a college student, wrote the following article about her sudden mesothelioma diagnosis:

NEW YORK CONFERENCE

Dr. Lee Krug and Dr. Harvey Pass

On Friday, September 27th, the Meso Foundation brought together the New York region’s top mesothelioma experts for our annual conference, Malignant Mesothelioma: Knowledge is Hope, at the Harvard Club of New York City. Attendance sold out as patients, family members, doctors, and community members joined us for the conference. Topics discussed included mesothelioma surgery and chemotherapy, genetics of mesothelioma, the importance of biomarkers, radiation therapy, clinical trials, and asbestos exposure.

 


Be sure to read our two press releases detailing Meso Awareness Day activities and our Congressional Briefing:

Regional Conference on Malignant Mesothelioma: Destination New York

NewYorkSkyline

All of us at the Meso Foundation have been very aware of the need mesothelioma patients and families have to connect with others facing similar challenges, and learn about their disease and its treatment options.

For this reason, for the second consecutive year, we are organizing a regional conference taking place in New York City.

On Friday, September 27, at 9 AM, please join us at the Harvard Club for this one-day conference on malignant mesothelioma for patients, their families, doctors, and others wishing to learn more about this disease. The conference is supported by an educational grant from Levy Phillips & Konigsberg, LLP.

We put together an impressive line-up of mesothelioma experts from the New York area who will discuss topics including standard treatments, ongoing research, environmental/occupational exposure risk, and legal implications. Read the agenda here. 


Register

You can watch below our last year’s conference:

The cost to register is $25 per person (includes all sessions, breakfast and lunch). You may register by visiting curemeso.org/knowledge or by calling the Meso Foundation at (703) 879-3797. Registration fees will be donated back to the Meso Foundation. Availability is limited. You must register before our deadline of September 10.

If you are traveling to the conference and need a hotel room, we put together a list of hotels available nearby. Due to the Clinton Global Initiative annual meeting taking place around the same time as our conference, the hotels near the Harvard Club and throughout New York City could be very expensive, so make sure you book early.