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.

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.

Meso Foundation’s New CEO

MelindaThe Meso Foundation has a new CEO! Melinda Kotzian, who has thus far been the Chief Operating Officer, will now serve as the Foundation’s first Chief Executive Officer. This change in title provides Melinda with authority to fully perform all operational, administrative and executive duties.

Mary Hesdorffer, Nurse Practitioner, remains the organization’s Executive Director, and together she and Melinda share the leadership tasks of the Meso Foundation.

Putting a National Spotlight on Asbestos

danger-asbestosA major investigation appearing on the front page of Monday’s Wall Street
Journal looks into fraudulent asbestos claims and the multi-billion dollar
mesothelioma litigation industry. (You can read an abstract of the article
http://online.wsj.com/article/SB10001424127887323864304578318611662911912.html?mod=WSJ_hps_MIDDLENexttoWhatsNewsTop. Full access requires a subscription.)

As a science-based organization and the largest independent source of
nonprofit funding for mesothelioma research, we do not advise on legal
issues. Nor do we provide referrals. As a foundation we firmly believe in
full adherence to ethical guidelines when addressing the impact of
mesothelioma. Our mission is based solely on putting patients first, and
mobilizing as many resources as possible to fund independent, peer-reviewed
research projects.

Asbestos liability is very complex and difficult to decipher, and it has
skewed the public’s understanding of mesothelioma, which impacts thousands
of individuals, regardless of age or background. But, just as we saw at
our annual symposium, there are new victories in the field of mesothelioma
- both in the labs and the clinics – that give us a lot to hope for. We
are finally very close to seeing treatments based upon a personalized
medicine approach having identified unique targets and genetic
alterations. I have never seen this much excitement among the medical
professionals who have dedicated their careers to finding a cure for
mesothelioma.

And while the economic, legal and political aspects of asbestos have never
received national attention like this before, it is our hope that the
national spotlight on this issue will help us lead to finding a truly
effective life-prolonging treatment for mesothelioma patients, and a cure
for this aggressive and neglected cancer. This important article, which
comes on the heels of our annual gathering, gives us a renewed sense of
hope and purpose.