“Daddy’s Little Girl”

Erica_LanceThis Sunday is Father’s Day.  A day that is so hard for many of us. The date on the calendar stares back at me, as I recall fond memories of an amazing man- my father, Lance S. Ruble.

My father was diagnosed with pleural mesothelioma in August 2007. His life, our life as a family would be severely altered from that date forward. My dad embodied the meaning of “LIFE” and getting better for his family was now his only mission.

Facing the disease head on, he bravely chose to undergo all possible treatments available. He had chemotherapy, surgery, and radiation all in just 10 months. My dad was a fighter, like so many dads out there who have also courageously battled the disease. Sadly, one year later, my dad, my mentor, my hero, my friend, was gone. The man who I looked up to, the man I sought out advice from, the man who told me that everything would be all right, the man who was always there, was there no more.

I know many of you can relate to my words because you have lived them too. Though Father’s Day and really every day without my dad is difficult, I am often reminded how lucky I was, how fortunate I still am to have had this type of relationship and man in my life.

Even five years later, when I am making a major life decision, I am thinking “What would dad do?” When my son scores a goal at soccer, I can hear him say “Way to go!” When I am sad and missing him, I can see him putting his arms around me.

Very few people in our lives will make such a profound impact like our fathers have. So, as we remember and celebrate these incredible men be thankful that they have touched our lives in such a way that time will never alter.

Happy Father’s Day Dad.  Love, your little girl.

Erica Leigh Ruble is the fundraising coordinator at the Mesothelioma Applied Research Foundation. She is an estate planning lawyer from Fort Lauderdale, Florida. Erica, received her JD from Nova Southeastern University Law School and her MA and BA in Communication from the University of Central Florida.

Erica’s life was forever changed when her dad, Lance, was diagnosed with pleural mesothelioma on August 7, 2007. Lance owned a successful construction company, coached collegiate roller hockey, and gave back to the community. But the greatest talent he shared was making his family feel loved and safe. Determined to get well, he had chemotherapy, surgery, and radiation in 10 months. He passed away shortly after treatment, on August 16, 2008.

Watching her dad lose his life to such a painful disease ignited a fire inside of her to search for better treatments for mesothelioma patients. Though her dad was gone, he embodied the meaning of LIFE. It is his spirit that lives on in her to help others. Erica is committed to a life-long contribution to fighting mesothelioma. She and her family fund the Lance S. Ruble Memorial Grant which contributes donations yearly to mesothelioma research. By promoting advocacy, awareness, and research, Erica has found a way to channel her pain to help others. It is her life’s mission to eradicate the vicious effects of this orphan disease.

Update from The American Society of Clinical Oncology (ASCO) Annual Meeting

By Lee Krug, MD, Memorial Sloan-Kettering Cancer Center

ASCO-2013_1The American Society of Clinical Oncology meeting was held from June 1-4 in Chicago. This is the largest oncology meeting each year with around 30,000 attendees from all over the globe who congregate to discuss the latest research in all cancer types. I thought I would summarize a few of the presentations that were made regarding mesothelioma.

Accelerated hypofractionated hemithoracic intensity modulated radiation therapy followed by extrapleural pneumonectomy for malignant pleural mesothelioma (IMRT)

This study was presented by Dr. Marc de Perrot from Toronto, a member of our Science Advisory Board. In this approach, patients with early stage mesothelioma are treated first with high dose radiation over one week, and then, after one week of rest, patients then undergo an extrapleural pneumonectomy (EPP). If patients were found to have mediastinal lymph nodes at the time of surgery, they were planned to get chemotherapy afterward. This was a select group of patients who participated since only 18% of the patients with mesothelioma seen at the center over 4 years were enrolled on this study. Amazingly, the complications after the surgery were not more than expected, though one patient did die of an infection. Furthermore, the survival rates were quite promising; for patients with epithelioid subtype, 85% were predicted to be alive after 3 years. This is a high risk, aggressive treatment modality appropriate for only a select group of patients, and more follow up is needed. However, the excellent survival results are notable.

Randomized phase II study adding axitinib to pemetrexed-cisplatin in patients with malignant pleural mesothelioma

This was a trial conducted at a single institution in the Netherlands.  The researchers were aiming to find a drug that would improve the results of standard Pemetrexed (Alimta) and cisplatin chemotherapy. In this study, another drug called axitinib was added to that chemotherapy combination. Axitinib is an oral drug that blocks the vascular endothelial growth factor receptor (VEGFR) which is responsible for the formation of new blood supply to feed the tumor, which contributes to tumor growth. Patients were placed in two groups, one-third receiving treatment with pemetrexed and cisplatin alone, and two-thirds receiving the same chemotherapy plus axitinib. Patients received three cycle of therapy, and then underwent a pleurectomy (PD). The rate of tumor shrinkage and survival times were no different with the addition of axitinib, but the trial was quite small with only 31 patients in total, so it is difficult to draw definitive conclusions.

Phase I study of cediranib in combination with cisplatin and pemetrexed in chemonaive patients with malignant pleural mesothelioma

Dr. Anne Tsao from MD Anderson (another member of our Science Advisory Board) presented the results of this study on behalf of the Southwest Oncology Group. This study had a similar goal, to find a drug that could be added to standard chemotherapy. Like axitinib, cederinib is a pill that blocks the VEGF receptor, but it also blocks another growth factor called platelet derived growth factor receptor (PDGFR).  This study was designed to determine the side effects of that treatment and find the best dose. Twenty patients received the combination, and two doses of cederinib were tested. Patients received 6 rounds of chemotherapy plus cederinib, and then stayed on cederinib as a maintenance therapy after that. At the higher dose, two patients had severe diarrhea, two had debilitating fatigue, and one had confusion, so the lower dose was chosen for further study. Although the number of patients with tumor shrinkage was not impressive, the time before the cancer grew again was much longer than usual. A larger study is now ongoing in which patients are randomized, some receiving chemotherapy alone and some with chemotherapy plus cederinib.

Sensitivity of malignant mesothelioma lacking Merlin to the FAK inhibitor VS-6063: Evaluation of merlin/NF2 status in clinical samples

One of the genes that is commonly mutated in mesothelioma tumors is NF2 “(neurofibromin 2) This gene makes a protein called Merlin. Merlin sends growth signals inside the cancer cell and one of the proteins it interacts with is focal adhesion kinase (FAK). This abstract reported on experiments in the laboratory. The researchers treated mesothelioma cancer cells and also tumors in mice with a drug that blocks FAK called VS-6063. The treatment worked best in tumor cells that had NF2 mutations supporting their hypothesis. They have used this information to plan a large randomized trial with VS-6063 that is set to start this summer. Patients who have completed initial treatment with chemotherapy will be randomized to receive VS-6063 or placebo, to see if this drug delays the time before the cancer will start to grow again.

Janelle Bedel, a Meso Warrior, Brings Much-Needed Attention to Mesothelioma

MesoSym-0640A courageous meso warrior, Janelle Bedel, has been making huge strides in raising awareness of mesothelioma.

Last Thursday night, after announcing to her Facebook network that she was entering hospice care, hundreds, and at this point, thousands of Facebook users, changed their profile picture to the iconic symbol of Janelle’s fight against mesothelioma: the Wonder Woman logo. Janelle’s stoic attitude, despite several major surgeries and countless chemotherapy treatments, earned her the reputation of Wonder Woman among friends and family, and now even with strangers who read about her story online.

On June 3, Janelle, with her husband Andrew and 10 year-old son Carson by her side, was honored by the Mayor of Rushville, IN, where she lives, with a city medallion and proclamation declaring June 6 of every year as the “Janelle Bedel ‘Wonder Woman’ Day“.

Since then, she has also been featured in several news stories.

But that’s not all. With her friends and family, Janelle has already been a part of several fundraisers, and on June 19th, the Corner Restaurant in Rushville, IN will be donating 20% of its proceeds to benefit the Mesothelioma Applied Research Foundation.

Despite having been dealt such a difficult hand, Janelle has traveled across the United MesoSym-0528States, from Florida, to Washington, DC, to Las Vegas, NV, to New York City to fundraisers and awareness events. She has raised thousands in funding for research to honor her friend Larry Davis, who lost his battle against mesothelioma almost two years ago. Her recurring cancer has not stopped her from attending the Mesothelioma Applied Research Foundation’s conferences and meeting with Senators Coats and Donnelly and former Senator Lugar’s staffers, pleading for increased research funding for mesothelioma. She also played a key role in getting a resolution passed designating Sept. 26th as National Mesothelioma Awareness Day.

Does this story strike a chord with you? You can make a difference in the lives of mesothelioma warriors and mesothelioma survivors. Donate to mesothelioma research today.

2013 Grant Cycle Has Been Opened Up to Mesothelioma Researchers

researchThe Mesothelioma Applied Research Foundation (Meso Foundation) announced the opening of its 2013 Mesothelioma Grant Cycle to researchers across the United States and the world. Each grant is worth $100,000. To date the Meso Foundation has awarded over $8.2 million in research funds.

Researchers are invited to submit applications by visiting proposalCENTRAL’s website. There, they will find the listing for the Mesothelioma Applied Research Foundation along with submission instructions. Applications are limited to 10 pages (not including biographies) and are due no later than August 2, 2013. Final award decisions will be made in December 2013 and all applicants will be notified of the outcome.

Eligible projects may relate to benchwork, translational or clinical research that is not presently funded or pending review and may be conducted through any not-for-profit academic, medical or research institution. The Meso Foundation will review and monitor the project’s progress and results, requiring semi-annual disposition of funds reports, a ten-month progress report, a presentation at the Foundation’s Symposium and a full progress report at the close of the project.

Projects will be considered for funding by the Meso Foundation’s Science Advisory Board, whose members are published and esteemed doctors and researchers within the field of mesothelioma.

More information about the grants program and projects funded since 1999 can be found on the Meso Foundation’s website.

Meso Foundation Receives 4-Star Rating from Charity Navigator

4Star 125x125Charity Navigator, America’s largest and most-utilized independent evaluator of charities, has awarded the Mesothelioma Applied Research Foundation (Meso Foundation) the prestigious 4-star rating for good governance, sound fiscal management and commitment to accountability and transparency. The Meso Foundation is currently the only mesothelioma charity in the United States with such a rating.

Since 2002, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. The Accountability & Transparency metrics, which account for 50 percent of a charity’s overall rating, reveal which charities have “best practices” that minimize the chance of unethical activities and whether they freely share basic information about their organization with their donors and other stakeholders.

“In the field of mesothelioma, it is sometimes difficult to ascertain which organizations are actual charities and which ones merely serve the purpose of marketing legal services,” said Mary Hesdorffer, NP, the executive director of the Meso Foundation. “Our 4-star Charity Navigator rating demonstrates to our supporters that we take our fiduciary and governance responsibilities very seriously and that we are an ethical charity working hard to fulfill its mission to find a cure for mesothelioma and end the suffering caused by it.”

The Meso Foundation’s coveted 4-star rating puts it in a very select group of high-performing charities,” according to Ken Berger, President and CEO, Charity Navigator. “Out of the thousands of nonprofits Charity Navigator evaluates, only one out of four earns 4 stars — a rating that, now, with our new Accountability and Transparency metrics, demands even greater rigor, responsibility and commitment to openness. The Meso Foundation’s supporters should feel much more confident that their hard-earned dollars are being used efficiently and responsibly when it acquires such a high rating.”

The Mesothelioma Applied Research Foundation’s rating and other information about charitable giving are available free of charge on http://www.charitynavigator.org.