A Father Shares His Family’s Journey with Melanoma

By Skip Grinberg

In this guest blog post, Skip Grinberg shares his family’s experience with melanoma and his drive to advance research.

Skip Grinberg and his extended family

Skip Grinberg and his extended family

Life can occasionally throw you a sharp-breaking curveball. As a result, you may find yourself involved in issues and campaigns that you never could have anticipated. My interest in melanoma and participation with the Melanoma Research Alliance (MRA) fall into this category.

Two years ago my son, Lee, called to tell me that he had been diagnosed with melanoma that had metastasized to his brain. It was one of those phone calls you never want to receive – one that completely refocuses your life.

Lee had surgery a few days later to remove two brain tumors. After surgery he began investigating treatment options, including immunotherapy drugs, most of which were only available in clinical trials. He was fortunate to contact another melanoma patient, Jeff Rowbottom, who has been very active with MRA. With the help of Jeff and MRA, a new universe of information opened, assisting Lee in his understanding of the disease and treatment options. In December 2013, Lee entered a clinical trial – he received a combination of nivolumab and lirilumab, experimental immunotherapy drugs developed by Bristol-Myers Squibb.

As I followed Lee’s treatment, I became aware of the sharp rise in the number of melanoma cases and, in particular, the disturbing increase in diagnosis of young adults. I also became aware of the progress made in the past few years in the treatment of melanoma and the leadership role that MRA has played in funding research grants that have made these advancements possible.

In February 2014, I joined Lee at the MRA Annual Scientific Meeting in Washington. I was thoroughly impressed by the dedication of the researchers, the extent of the research being explored and its implications for the future – not only for the treatment of melanoma but also for other forms of cancer.  Although the research presentations were way over my non-scientific head, I was able to digest enough “big-picture” information so that I could explain immunotherapy to my friends and family.  The meeting also provided an opportunity to network with other melanoma patients and their families and many of the professionals working in this field. The experience further emphasized how MRA has been instrumental in the advancement of knowledge that has benefited Lee and many other patients, giving them something that had rarely existed in the world of metastatic melanoma – hope for the future.

I was very grateful and knew I had to do my part. I created a personal letter telling Lee’s story and sent it to friends and relatives, probably about 150 letters in total. The goal was twofold: to raise funds for MRA and to educate people on the seriousness of melanoma and the progress being made in its treatment. The response was overwhelming and personally very gratifying. Not only did MRA receive a significant number of contributions, but many people called to thank me for informing them about melanoma and to express support for Lee and wish him well. I am now starting to work on the second phase of my personal campaign for MRA. I am excited about it and hoping it is as successful as the first. In addition, our entire family supported #SunHatSat last Memorial Day weekend, to raise awareness about melanoma prevention. We took a photo of four generations of our family wearing hats that weekend at a family picnic.

As I said at the beginning, I never would have expected to be involved with MRA, but I am so glad I am because of the positive impact the organization is having on Lee and thousands of other patients. Our entire family is forever grateful.

Video: MRA Board Member and Melanoma Survivor Shares His Story at Forbes Event

Earlier this month, MRA Board Member and melanoma survivor Jeff Rowbottom spoke at the Forbes Healthcare Summit.  Jeff discussed how his diagnosis with melanoma brought him to the MRA and inspired the Leveraged Finance community to take action against the disease. This year’s summit, titled, “Empowering The Patient Revolution,” was attended by executive leadership and thought-leaders representing industry, government, academia, and advocacy.  Check out his speech and hear his perspective on how patients are impacting drug development!

MRA Out and About

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MRA staff has been traveling the globe for the past couple weeks, from London, to Denver to other exotic locales.  Our Chief Scientific Officer attended the annual meeting of the European Cancer Congress (ECC) in Amsterdam, while our communications and policy staff spent the past two days at the BIO Patient and Health Advocacy Summit down the street in DC.  These two events have given us a lot of updates on the progress of melanoma research, as well as the trends around patient engagement in the drug development process.  We wanted to take a minute to share some of the highlights with you:

Immunotherapies and combinatorial approaches to treating cancer, and melanoma specifically, were front and center at the ECC meeting, Europe’s main oncology meeting.  Significant data was released on several different approaches to treating melanoma.  Suzanne Topalian, MD, Johns Hopkins University, and Melanoma Research Alliance (MRA) Scientific Advisory Panel Chair, delivered the meeting’s opening lecture, titled “Mobilising the Immune System to Treating Cancer.”  Multiple MRA-funded investigators presented research and led sessions during the conference.

Exciting findings presented at this year’s meeting included results from a long-term follow up study of patients treated with ipilimumab (Yervoy), which was approved for the treatment of metastatic melanoma in the U.S. in 2011. The study, presented by MRA-funded investigator Dr. Stephen Hodi of Harvard Medical School, found that 22% of patients studied who were treated with Yervoy exhibited a durable response, and were still alive after three years on the treatment.  While these results are positive news in the battle against melanoma, work must continue,  as the majority of melanoma patients do not exhibit this type of positive, sustained response.

Other melanoma highlights from the meeting included additional encouraging data on combinatorial approaches to treating melanoma—including BRAF inhibitors in combination with MEK inhibitors—data on improved methods of predicting a treatment’s efficacy from early readouts in clinical trials, as well as further insight into the genetics behind melanoma and the differences between subtypes of the disease.  These advances hold the potential to make melanoma drug development more efficient, and to produce more effective treatments for patients more quickly.

The findings from the meeting are encouraging, but underscore the importance of continued research into melanoma.  The BIO Patient and Health Advocacy Summit focused on how patient advocacy organizations like MRA can make an impact on medical research.  The meeting highlighted industry best practices in patient-centered drug development and provided real-life examples of similar non-profits helping to find and develop new treatments for life-threatening diseases.

A speaker from Eli Lilly’s Clinical Open Innovation team stressed that the time has never been better for patient involvement in every step of drug development.  The rise of online patient communities, data sharing and tools to empower patients has ushered in many new opportunities for innovation and collaboration.

Biotechnology company Genentech shared one of their current data collection campaigns to illustrate this point: Searching for genetic answers about why a drug works in some people and not others, the company is encouraging people who have taken the drug for several types of cancers to participate in a study with the health and DNA service company 23andMe.  Qualified patients send a vial of their spit into 23andMe, and then the companies will jointly analyze the results.  The study has been promoted primarily on social media and through online patient communities, and is one of the first studies that people can participate in from the comfort of their own homes.  Check out this viral video encouraging participation the study:

Patient advocacy groups have also been stretching their wings lately.  Industry group BayBio and FasterCures recently conducted a study that found that almost 90% of disease groups like MRA already have at least one partnership with companies in the industry.  At last count, MRA has more than 10 research awards co-funded by industry.  With research picking up in the melanoma space and more than 85% of biopharma companies looking to increase their alliances with patient groups, we are excited for the collaborations the future will bring.