The Meso Foundation Now Accepts Bitcoin Donations

BitcoinThe Meso Foundation is now accepting donations in Bitcoin, in addition to all of the traditional ways to give. The Bitcoin donation page can be found at curemeso.org/bitcoin.

“As more and more businesses are accepting Bitcoin as a form of payment, we decided it was important for us to do the same,” said Melinda Kotzian, the chief executive office of the Meso Foundation.

Bitcoin is an online-only, internet currency, started in 2009. Bitcoin donations can be easily and immediately following a donation, converted into any other currency, including the US Dollar.

“We do not want anything to stand in our way of raising funds to fund mesothelioma research, education, support, and advocacy. Our goal is to save lives, and we’ll do whatever it takes to get there,” Ms. Kotzian added.

The Meso Foundation’s bitcoin donation page can be found at curemeso.org/bitcoin.

Meso Foundation’s Annual Report 2013 Released

Annual Report 2013The Meso Foundation recently released its 2013 Annual Report, featuring the organization’s audited financial information, as well as details about its 2013 programs.

According to the report, in 2013, the Meso Foundation spent 86 cents of every dollar on programs versus 14 cents on fundraising and administration.

“The Meso Foundation strives to keep costs to a minimum,” wrote the Foundation’s chief executive officer, Melinda Kotzian.

“As a result of the Foundation’s fiscal responsibility, we have been recognized as a four-star charity through Charity Navigator, named an accredited charity by the Better Business Bureau, and awarded the prestigious 2013 Top-Rated Award for GreatNonprofits,” Ms. Kotzian added.

The Meso Foundation is also listed through the National Cancer Institute as a mesothelioma support service organization, an honor attributed only to a select number of national nonprofit organizations that fit very strict criteria.

In addition to education, support services for patients and their families, and advocacy for increased federal funding of mesothelioma research, the Meso Foundation lists its total research funding at $8.7 million, which to date has yielded 180 articles published in 83 scientific journals.

The Mesothelioma Applied Research Foundation’s 2013 Annual Report is available at curemeso.org/annualreports.

Bill Ziegler on his Experience as a Survivor Advocate

Bill ZieglerIn June, mesothelioma warrior Bill Ziegler represented the mesothelioma community as a Survivor Advocate at the 7th Biennial Cancer Survivorship Research Conference: Advancing Survivorship Care through Multilevel Collaboration after being nominated by the Meso Foundation.  He was one of twenty survivors accepted out of 100 applications. Survivor Advocates attended the conference to participate in the conversation about the latest advances in survivorship care and how to improve the quality of life for cancer survivors. He wanted to share what he learned with the meso community:

Greetings Meso Community!

A little over a month ago I attended a survivorship conference in Atlanta.  It has taken me a while to formulate my thoughts on the overall experience and information I received during the conference.  There were over 500 people in attendance at the conference—20 of whom were survivor advocates.  The advocates represented different cancer support organizations across the US.  On the first day, there were sessions that placed survivor advocates at the tables of researchers.  Every 20 minutes you would switch tables and meet and learn something new.  Every researcher and advocate brought something uniquely different to the table.

I did attend a few breakout sessions.  The sessions I attended ranged from Adolescent and Young Adult (AYA) cancer survivorship to financial impact of a cancer diagnosis.  These were great sessions that provided a lot of relevant information on how much more money cancer patients will spend on healthcare over time to social stigma of a cancer diagnosis within a social group.  Without a doubt, there was a lot of information presented.  But the core reason I wanted to attend the conference was because of the specific nature of the challenges that a diagnosis of mesothelioma presents to patients.

I wanted to understand how, as patients, we can get the best treatment possible, and then continue to be followed over time from cancer care and then transition to primary care.  It was clear that this gap in care was the biggest elephant in the room—and identified repeatedly by a multitude of researchers.  For a lot of mesothelioma patients, as well as myself, this diagnosis of mesothelioma means that you will have to travel to a specific treatment center and have a plan tailored to your own personal needs.  Whether it is to have surgery, chemo, radiation, or trials, a plan is usually made at one of a handful of treatment centers across the US.  After treatment, which is usually hundreds of miles or hours away, patients are sent back home to recover and be followed once every few months back at the specialists office.  Any non-cancer treatment follow up will usually be done with your primary care physician—and it is rare that they have all of your records from your other healthcare providers unless you specifically provide them to your primary care physician.  It is this disconnect that so many of our community members have expressed concern with, as well as myself.

I often reflect on my own adventure and ask myself how I’ve been successful.  I’ve done well because I try to have a resource for everything.  It has become clear to me that patients who have the right resources win.  Whether it be a mental support resource, a doctor resource, a travel resource, or a cancer “best practice” resource, I can always find what I need.

Patient resource management is critical for their success.  At the conference, there was a clear trend towards “nurse navigators.” Nurse navigators help patients find health resources, and guide patients through treatment options.  Nurse navigators are popping up in health organizations across the country to assist patients and providers becoming more aligned.  It’s a good thing for survivorship, and while it’s something that is growing, not everyone has a navigator and there are still a lot of gaps in total care for cancer patients. I was proud to know that the Meso Foundation has been at the forefront of this trend for nearly a decade, providing medical consultations and support, and helping mesothelioma patients, through Mary Hesdorffer, Nurse Practitioner.

I’ve thought a lot about how each patient can manage resources effectively and be organized in keeping those resources and in the way they receive care.  I told this to another advocate and he showed me a portable handbook that he brought with him.  This handbook was standardized for patients, caregivers, and doctors.  It kept all vital information so resources could be available and easily shared.  I thought it was great, and extremely helpful!  I’m going to get a couple copies of the book because I think it would be beneficial for our patients to have.  It will provide a standard handbook for patient resource management.  So, I’m going to talk with Mary on how we can develop something that can be a “patient resource management tool.”

I am extremely happy that we, as mesothelioma patients, have a great cancer community facilitated by the Meso Foundation that allows us to connect and learn from one another.  It is a GREAT resource and wonderful tool!  By attending the conference, I have also learned that there are many different components of survivorship, and that it means something different to everyone.  I would also like to thank everyone in the community for allowing me to participate and be an advocate for our mesothelioma community—attending the conference was just more proof that we have some of the best people and resources available.

-Bill Ziegler

Read more about Bill on our blog.

Meet the Mesothelioma Experts: Stephen Isaacs Discusses New Clinical Trial Using Listeria Bacteria

Stephen IsaacsOn September 10, the Meso Foundation will interview Stephen Isaacs, the chairperson, president, and CEO of Adura BioTech, during a new installment of the Foundation’s Meet the Mesothelioma Experts live broadcast. The interview will be led by the Meso Foundation’s executive director and mesothelioma expert nurse practitioner, Mary Hesdorffer, APRN.

The focus of the interview will be Audo BioTech’s experimental therapy for malignant pleural mesothelioma, known as CRS-207. CRS-207 is a weakened form of Listeria bacteria modified to reduce its ability to cause infections, but still able to stimulate the immune system.

The interview will be available live on September 10, at 1PM EST, by calling into a conference-call number. The interview is free of charge, but listeners must RSVP ahead of time by visiting curemeso.org/experts in order to receive a call-in number.

In his position at Aduro BioTech, Mr. Isaacs initiated the company’s current immunotherapy program based on attenuated strains of Listeria monocytogenes. He was responsible for recruiting key members of the current vaccine team with deep expertise in the biology of Listeria. Mr. Isaacs has published over 20 peer-reviewed scientific articles and is an inventor on over 40 issued patents.

To RSVP for the upcoming session with Stephen Isaacs or to listen to past Meet the Mesothelioma Experts sessions, visit curemeso.org/exerpts.

Acclaimed Author Lionel Shriver Supports Mesothelioma Awareness Day

Author Lionel Shriver pledges her support for Mesothelioma Awareness Day.The Meso Foundation recently released a video of award-winning author, Lionel Shriver, in which Ms. Shriver urges viewers to observe September 26th as Mesothelioma Awareness Day. The video can be watched on the Meso Foundation’s YouTube channel, or through the player below.

“Several years ago, one of my closest friends was diagnosed with mesothelioma,” says Ms. Shriver in the video. “Her experience of living with the disease, and ultimately dying from it, moved me to write my tenth novel, ‘So Much for That.’”

“So Much for That” is a fictional novel that tackles the complicated topic of healthcare in the United States through the experience of a mesothelioma patient and her family.

In the video, viewers are urged to visit the Meso Foundation’s website at curemeso.org to learn more about Mesothelioma Awareness Day.

Ms. Shriver is best known as the author of the award-winning novel “We Need to Talk About Kevin,” and “Big Brother.”

Mesothelioma Awareness Day is a grassroots movement established in 2004 by volunteers of the Meso Foundation with the goal of bringing more attention and funding to this historically-neglected cancer.

“On behalf of the mesothelioma community, I am infinitely grateful to Ms. Shriver for her help in raising awareness,” said Mary Hesdorffer, the nurse practitioner and executive director of the Meso Foundation.

“More awareness of this disease and the consequent increased funding for research, education, support, and advocacy is exactly what is needed to help us save lives,” added Ms. Hesdorffer.

View Lione Shriver’s video below, and learn more about Mesothelioma Awareness Day at curemeso.org/awarenessday.