Sunday, August 27, 2017

A Leader in Innovation

Let me tell you about one of the most passionate, committed cancer researchers I have ever met. I actually first met Johnathan Whetstine on Twitter, in January of 2016. He started following me and I started following him because we seemed to share and like similar content and points of view on Twitter. The common theme was the need to support basic cancer research. At the time I was working for the National Foundation for Cancer Research and my role was to raise money to support cancer research laboratories like Johnathan’s. After a series of exchanges during the spring on Twitter, he asked me if I was going to the Partners Healthcare World Medical Innovation Forum in Boston. I told him I was, and we planned to meet there. What I didn’t know until I got there, was that Johnathan was actually one of the presenters! Turns out he was to be onstage when they revealed the “Disruptive Dozen.” The Disruptive Dozen was created to identify and rank the most disruptive technologies that Partners Healthcare’s leading faculty feel will break through over the next decade in cancer care. Wow! His work in epigenetics was one of the promising technologies, and Johnathan’s lab was leading the way. I had no idea that I had met one of the most accomplished researchers in the cancer research community!

PASSION FOR SCIENCE

Johnathan and I became fast friends because he shared my passion for research, and he was bursting with excitement about his work. He told me he knew he wanted to become a scientist when he was 14 years old because he was inspired by a science teacher who made science fun and interesting. Growing up in rural Kentucky and Tennessee he had huge ambitions and decided in high school that he wanted to find a cure for cancer. And he ended up as a post-doctoral fellow in the lab of Dr. Yang Shi at Harvard Medical School before getting his own lab. He’s a Ph.D. so he doesn’t treat patients, but he hopes his work will provide insights into the development of better molecular diagnostics, epigenetic therapeutic molecules, or novel therapeutic combinations so better efficacy can be achieved in treating cancer. Research like Johnathan’s also are the foundation in the research continuum: basic research discoveries need to take place to technologies into development, and lead to clinical trials. This is the first step in getting a new drug or technology from bench to bedside.

FUNDRAISING IS A REALITY


According to Johnathan, he spends up to 75% of his time on fundraising for his lab. This includes writing NIH grants and grants to the American Cancer Society, American Lung Association and foundations. He has built some strong relationships with these organizations. He also has connected with many patients through this process, attending events and inviting interested parties to his lab. However, it seems to me he should be spending 75% of his time in the lab – imagine how much more impact he could have on advancing research if he didn’t have to spend so much time on paperwork? He would love to add more postdocs to his lab to do additional experiments based on his theories, but he has to balance that with his sources of funding. He is responsible for funding his lab. It’s like running a small business because he has to make decisions on growth and staffing based on the revenue coming in. He laments how challenging and how many years it takes to get an NIH R01 grant, the largest grants. The average age of first-time R01 funded investigators who have Ph.D. is 42 and the average grant is $499,221. Are we missing out on research discoveries from younger scientists because of a lack of funding? Scientists like Johnathan love to have people visit his lab so he can share his work and hopefully inspire people support him, but the unfortunate reality is that this takes up a tremendous amount of his time. 

Thursday, June 29, 2017

The Role of Basic Research in Precision Medicine

MEET JOHNATHAN WHETSTINE

Me and Johnathan outside his lab in Charlestown, MA

I had the privilege of interviewing Johnathan Whetstine, a cancer researcher at Massachusetts General Hospital, at his laboratory to get his perspective on precision medicine. Johnathan’s field is cancer epigenetics. His lab investigates how the microenvionment around DNA controls gene expression while maintaining a stable genome. I thought he’d be the perfect person to give me historical context of precision medicine and what role basic scientific research plays in the process. “If you ask me as a basic scientist, the beauty of precision medicine is that you are starting to apply mechanistic knowledge in the context of how individuals will be diagnosed and treated.  By applying knowledge from laboratory settings, the medical community can make better decisions about what biomarkers to use as well as make predictions about the response,” said Johnathan.   He added, “By taking this approach, you’re now tailor-making a treatment to a person and cancer sub-type. This approach is in contrast to the one drug fits all policy.  Personalized Medicine is embracing individuals and cancer sub-types. Human variation in the population and the fact that tumors can change requires this in depth evaluation that will change medicine moving forward. The beauty of personalized medicine is it benefits from discovery!” Basic scientific labs like Johnathan’s are critical to the ecosystem as more targeted treatment of cancer evolves.

YOU CAN’T FIX WHAT YOU DON’T KNOW

The example Johnathan likes to give to describe basic research and precision medicine is comparing an old car to a new car. He says, “If you open the hood of a ‘64 Chevy Impala you can see where all the parts are, it’s all connected so you can fix it – it’s very simple. New cars today are typically cased, all electronics, you can’t see what some of the parts are so it’s hard to figure out a problem. I can mechanistically see what’s inside the old car and the average mechanic can fix it. On the new car, the average mechanic can’t just pick it up and fix it because they don’t always understand the mechanism.”  So in other words, Johnathan thinks precision medicine is the process of starting to simplify and map a complex engine so better diagnosis and treatment can be made. Precision medicine is a combination of scientists and physicians building tools to understand what is ‘under the hood’ so treatment is more effective long term.” And he adds, “If you know more about what is inside the tumor, you can deliver more optimal therapy, you can go after cancer sub-types. Look at lung cancer obviously, between the ROS mutations and the translocations and various EGFR mutations, you can predict if someone is or isn’t going to fail on certain treatments. Why? Here’s the gene, here’s the information that’s biologically linked in the lab – that together gives you precision medicine.”

Me and Johnathan and our wives at the MGH 100 2016

HISTORICAL PERSPECTIVE: SEQUENCING

Johnathan says he likes to remind people that the advances in precision medicine, and the breakthroughs in targeted treatments we have seen are a result of all of the investment in research that came before him.  In his words, “Something that was invested in 20 years ago doesn’t mean it’s not going to pay off today. A big example of this is sequencing. We take for granted that we can go to an office at Mass. General or other places, and they can take your tumor and tell you the gene(s) that are changed and possibly impacting tumor action and therapeutic options.  This exists because of the earlier investments both in the technology as well as the science to identify the genes that are important.” He’s referring to the investment into the Human Genome Project, and the impact genomics has had in the United States. Between 1988 and 2012, the federal government invested $14.5 billion in the field of genomics, with an enormous economic and societal impact from that investment. It’s estimated this returned $966 billion in economic impact in the United States, according to the advocacy group United for Medical Research. Johnathan added, “I would challenge anybody to answer the question, where can you make a $14.5 billion investment and turn it into a trillion dollars today?” And amazingly, while it took almost $15 billion and more than a decade for the government-funded DNA effort to fully sequence a human genome for the first time, companies can now sequence a whole genome for about $1,000 and do it in a day.

PUTTING YOUR DNA INTO THE GAME

I asked Johnathan what he sees in the future for precision medicine. In his words, “I predict that the more we start to break apart various pathways in the cell that are involved with drug resistance, or pathways that are involved in certain therapeutic sensitivities, we’re going to find commonalities across tumors, and also tumor specific properties, which provides a collection of names to mark and develop drug targets.” He sees initiatives like the Cancer Center tumor profiling and MGH Biobank as important to the future of precision medicine. He thinks it’s great that everyone who walks in the door is asked if they want to contribute. Even John’s mom asks the question, “why would I want to do that?” He calls it putting your DNA in the game. In his words, “There have been something like 115 published studies using this biobank where they’ve established unique genetic relationships to disease to direct responses.”  He adds, “Let’s look at lung cancer. Some of the mutations are rare – as small as less than 1% - but when you have over 2 million people diagnosed across the spectrum, that’s a lot of people. The problem is that so many people are not connected. People need to empower themselves. If you live in an area with limited tools in America, you’re not required to get treated there. There are many big hospitals that want to help. You have to be your own advocate.”

Johnathan giving me a tour of his research lab

FINAL THOUGHTS

John believes that we must continue to fund basic cancer research so we can find more targeted treatments for more cancer patients. “Basic labs help put the narrative together – when you have the narrative then you have precision medicine. If I give you 2 nouns and ask you to write a story, you’re going to have to put it into context. We’re identifying nouns and by identifying them through sequencing and disease associations, you’re getting context.”, says Johnathan. He also believes it’s a generational thing. “Science is not just about today. Just as our children are the future of America, my protégés, the people who train with me are the future of this field. The cool thing is I now have my trainees going off to other institutions such as University of Colorado and Stanford, so it’s literally like a family tree – and that family tree has lasting impact. Each discovery gets seeded in a new location and we haven’t even touched the tip of the iceberg.” As for his advice to cancer patients, he says “I always recommend that you give yourself the power to go to places that have precision medicine as a focus. The best way to be empowered is to make sure this is a big focus of the institution – that gives it credibility. Go to trusted sources and get educated – get connected to people you can identify with.” 

#PrecisionMedicine

Wednesday, May 17, 2017

Communication Between Cancer Patients and Researchers: Challenges and Opportunities


Taking The Mystery Out Of Cancer Research

When I started working at the National Foundation for Cancer Research, I was charged with educating our donors about the cancer research we were funding. To do that, I felt it would be helpful to meet the actual researchers personally, get to know them and their work, so that I could articulate this to our donors. What better way to take the mystery out of research by sharing their stories? I became known as the Cancer Research Evangelist because after getting to know many cancer researchers personally, and visiting their laboratories, I became an advocate for the need for funding to support their work.
In my experience, many of the researchers I met were passionate and approachable. They had offices with pictures of their families, they loved their work, and they just came across as real people. However, not a lot of people I know have ever met a cancer researcher.
I think it’s important that researchers and patients get to know each other because researchers can help give patients hope that someone is working on figuring out what is causing their cancer, and working on how to treat it. And I think it’s important for researchers to engage with patients because it puts a face on the disease their laboratory is trying to solve. This gives the researchers motivation and greater purpose to their work. I think there are a few important reasons for this, as well as challenges and opportunities to improve the communication between researchers and patients.
The Challenge For Researchers
In my experience, there are two primary reasons that researchers do not engage with patients, and the challenges for them are very understandable.
First, the system: researchers are so burdened with getting funding grants, and with making sure that they produce published papers so they get tenure, they simply do not have the time to engage with patients. Indeed, I was astonished to learn that the institutions where researchers worked did not financially support their labs. For example, if you’re a cancer researcher at Dana Farber, you get lab space but you are responsible for raising money to support your staff and some of the equipment and supplies. Almost every single researcher I’ve met has told me that they spend about 75% of their time fundraising. That’s how much time it takes to write grants to the NIH and nonprofits like the American Cancer Society and other foundations, do all the paperwork, and meet with foundations to help with fundraising. This all takes valuable time away from time spent in the laboratory. Given that, it’s hard to imagine researchers doing outreach to patients.
Unfortunately, this is the nature of the system, and I think that sometimes the humanity gets lost in the sense that hospitals or major medical research institutions may not appreciate the value of researchers spending time with patients and educating the public. From the researchers’ perspective, educating the public can help spread the word about their work and help in raising money for their work. Patients can become advocates for the research lab.
In a perfect world, research labs would operate on a fixed supported budget where they know they have money to do their work. And the time they may have wasted not getting a grant – which in oncology, only 12% of grants get funded – would be spent on community outreach and education.
In my opinion, the second reason many researchers don’t connect with patients may just be because of personality. The average researcher may not be very comfortable meeting with laypeople to talk about their work, or see the value in connecting with patients. While I’ve met some that are at ease in social settings, for some this is just not their gift.
The Challenge For Patients
How many cancer patients have ever met a cancer researcher? Or visited an actual research laboratory? Probably not very many. But I think patients would benefit by connecting with cancer researchers to understand what they do and see how committed they are to the cause. And they would have the ability to share their real patient experience.
In my experience, the primary reason patients don’t connect with researchers is they just don’t know how to find or approach a researcher. Before I started meeting researchers and visiting labs, I thought of cancer research as this vague, mysterious and institutional concept. I just thought of it as the institution — such as Dana Farber or Mayo Clinic — that was doing the research. I never even considered the actual people who were doing the work! Most patients probably are like I was, and didn’t even think about contacting real researchers. Other patients may just have a personality that makes them uncomfortable reaching out to strangers, or they might be intimidated by talking to someone with high level standing in the cancer community. In particular, many may not think they could be comfortable contacting someone at what they might consider prestigious institutions.
But patients could benefit from meeting researchers and advancing their understanding of their disease. What better source of information about a patient’s actual cancer diagnosis than a person doing research on the specific problem? Looking back at my own case, when I was diagnosed with a neuroendocrine tumor in my lung, it would have been amazing to meet a scientist who studies my disease.
The Opportunities
I believe there are many opportunities to improve the communication between researchers and patients, starting with these two:
First, cancer nonprofits and related organizations need to play a role in connecting patients to researchers. A good example is the American Association for Cancer Research Scientist-Survivor Program (AACR SSP). The goal of the program is to encourage survivor and patient advocates to develop stronger backgrounds in cancer research and related issues, keep abreast of recent advances, and be exposed to the knowledge and dedication of cancer scientists. It also allows for scientists to gain a more personal understanding of cancer’s impact on patients and their loved ones. Several of my Precision Medicine Advocates Program colleagues attended the 2017 AACR SSP and wrote about it here, here, and here.
Many cancer nonprofits such as the American Lung Association, and the Multiple Myeloma Research Foundation also have access to and have relationships with researchers. They may know which ones are open to and have the personality to want to meet patients. These nonprofits should proactively educate their communities and encourage them to ask to meet researchers. And they can invite researchers to their events. For example, last year at a Making Strides event, the American Cancer Society invited researcher Johnathan Whetstine from Massachusetts General Hospital to come meet participants in the walk. He volunteered his time to come out meet people. Hospitals and medical research organizations can also have “meet the researcher” events and encourage patients to come.
Second, social media is a great opportunity for patients to find researchers interested and willing to meet and engage with patients. For example, anyone can post asking if there is a scientist out there who is studying the particular area of interest who is willing to connect.  Researchers on social media are likely the ones already engaging with patients.

The bottom line is that some of the challenges such as researchers’ time cannot be solved. But with willingness from all stakeholders, and with the help of nonprofits and social media, the communication between researchers and patients can improve.
#PrecisionMedicine

 

Wednesday, February 22, 2017

Community Building in the Age of Precision Medicine

When I was diagnosed with lung cancer years ago, my wife (who is a nurse) told me that the first thing I needed to do was to become my own advocate – to be proactive in seeking information about my disease and my care strategy. Of course, this was before the advent of genetic testing and the era of precision medicine. But even today, too many cancer patients die or suffer through toxic treatments and expensive hospitalizations when state of the art molecular testing could have offered better options with either approved treatments or promising clinical trials. Most patients are not as proactive and self-advocating as they could be, and there is a need to raise this awareness about just how a newly diagnosed patient can become his/her own advocate. One way is to connect with other patients with a similar diagnosis, either online or in person.

More and more cancer patients are attending medical conferences and connecting with other patients. In many cases, because of molecular testing that has identified a specific mutation, patients can meet other patients with the same genetic mutation. Some end up forming groups (communities) to share their common journey. One example is a group with the identified non-small cell lung cancer (NSCLC) mutation called ROS1. Tori Tomalia, a two-time cancer survivor currently living with stage 4 NSCLC, helped form the group after attended a conference where she made some connections with others with the ROS1 mutation. The group ultimately started a private Facebook page, and began connecting with other patients with the ROS1 mutation. The group became a place for to share treatment journeys, discuss clinical trials, exchange advice on symptom management and pool their knowledge. As the group grew to over 100 people, they realized that they could make an impact and came up with the idea to approach a foundation about doing a custom research study. They realized that they could become their own advocates in a very big way by leveraging their numbers to hopefully move research forward. They contacted The Bonnie J. Addario Lung Cancer Foundation (ALCF) and they agreed to get behind a research initiative.

ROS1 It is a rare mutation that affects only 1-2% of NSCLC diagnoses, but also one that has a currently approved treatment that targets this mutation, crizotinib (Xalkori). Xalkori was initially approved by the U.S. Food and Drug Administration (FDA) to treat patients whose non-small cell lung cancers (NSCLCs) harbor an alteration in a gene called ALK, which occurs in up to 8 percent of patients with the disease. In March, 2016 the FDA expanded the use of Xalkori to include lung cancers with a second abnormality, the ROS-1 gene alteration.  Because ROS1 also occurs in several cancer types including gastric cancer, ovarian cancer, glioblastoma, melanoma etc., ALCF wanted to focus on this under-studied rare molecular subset of cancer and understand what drives oncogenesis and disease progression in these tumors. So in collaboration with this group of cancer patients whose tumors have ROS1 fusions (they call them the ROS1ers), they launched a global effort to study ROS1 fusions across ALL tumor types.

This is a great example of patient empowerment and advocacy, started because a group of patients who met at a medical conference realized together they could make a difference. Using the power of social media, they built a community and took the initiative to approach a foundation to advance research. We’ve come so far with molecular testing – lung cancer patients now realize it’s not just one disease, and there are opportunities to connect with other patients with similar diagnoses. And also the opportunity to find targeted treatments or clinical trials for their specific mutation. I continue to advocate for more research funding because, like with these ROS1ers, we can identify more mutations, build more communities, and discover more targeted treatments.
 
#CancerResearchEvangelist
#PrecisionMedicine

Tuesday, February 14, 2017

"Get Your Affairs in Order?" Not So Fast


It wasn’t that long ago that a diagnosis of stage 4 Non-Small Cell Lung Cancer (NSCLC) was death sentence. Patients often heard “I’m sorry, there’s nothing more we can do” or “it’s time to get your affairs in order.” Unfortunately, too often that communication still happens today. However, with the advent and increasing availability of molecular testing, we are able to identify biomarkers that can lead to available targeted treatments. My friend Linnea Olson is one shining example of how far we’ve come in lung cancer treatment, and gives me hope for good outcomes if patients get their tumors tested. It’s also why I am such a passionate advocate cancer research and precision medicine.
                                             Linnea (on right) and Dr. Alice Shaw
In 2006, Linnea heard the words ‘there is nothing else we can do.” Never one to turn away from the truth she wanted to know more, she wanted to know how much time remained. The answer was three to five months. And so she began to let go of her life—and to help her family do the same – and started saying her goodbyes. But then at her next oncology appointment something totally unexpected happened. A recent biopsy had been submitted for genetic testing and had come back positive for a newly identified mutation in NSCLC called an ALK translocation. A phase I clinical trial for an experimental agent targeting ALK mutations had begun recruiting at Massachusetts General Hospital (MGH).
In 2008, she became the fourth person in the world with NSCLC to take crizotinib (Xalkori). Seven weeks later, her scans revealed remarkable improvement. She was lucky to be at the right place, at the right time, and with the right oncologist, Dr. Alice Shaw at MGH. Since then she has been a participant in three phase I clinical trials. Of course, she still has lung cancer. But now almost 11 years later she is still inspiring me and other lung cancer research advocates who believe that molecular testing is key to matching specific mutations to targeted treatments.
Since the original discovery of the ALK rearrangement in NSCLC in 2007, small molecule tyrosine kinase inhibitors of ALK have transformed the course of treatment for those patients with ALK-rearranged (ALK-positive) NSCLC. Crizotinib was the first targeted therapy developed for patients with advanced ALK-positive NSCLC and has proven to be superior compared with first line chemotherapy in many global trials. However, patients invariably relapse on crizotinib, often within the first year of treatment, and research has been ongoing, trying to change this.
To address the growing issue of crizotinib resistance, multiple next-generation ALK inhibitors have been developed. The first of these new drugs—ceritinib (Zykadia)—showed significant clinical activity in a global phase I study leading to its approval in the United States, Europe, and elsewhere. Alectinib (Alecensa) now joins ceritinib as another next-generation ALK inhibitor approved in the United States for patients with advanced ALK-positive NSCLC previously treated with crizotinib. These approvals raise several important questions regarding the management of patients with advanced ALK-positive NSCLC. First, in a patient who has relapsed on crizotinib, which next-generation ALK inhibitor should be prescribed? This question does not have a simple answer, since the pattern of relapse can differ from patient to patient. More head-to-head clinical trials comparing next-generation ALK inhibitors need to be performed, but based on the available single-arm studies of alectinib and ceritinib in crizotinib-resistant disease, the systemic efficacy of these drugs may be roughly comparable. Ultimately, the choice of next-generation ALK inhibitor will need to be individualized for each patient.
The second question that needs to be addressed is whether next-generation ALK inhibitors like alectinib should be used in the first-line setting in place of crizotinib. At present, the standard approach—sequential therapy with crizotinib followed by a next-generation ALK inhibitor—is associated with a combined median progression-free survival of 18 to 20 months. Whether first-line use of a next-generation ALK inhibitor can lead to a comparable outcome is not yet known. However, limited data with several of the next-generation ALK inhibitors suggest that this could be the case. The final question concerns resistance to alectinib as new mutations continue to be identified. This will be an ongoing battle and I believe with continued support of cancer research, we will see new treatments matched to the new targets. Considering where we were prior to 2006, there is much hope for patients that are tested and ALK-positive is identified. And like my friend Linnea, patients won’t here “get your affairs in order.”

Monday, January 16, 2017

Targeting Mutations in Lung Cancer: EGFR

As I’ve previously written, the most useful biomarkers for predicting the efficacy of targeted therapy in advanced NSCLC are genomic alterations known as "driver mutations." These mutations occur in cancer cells within genes encoding for proteins critical to cell growth and survival. Through the use of molecular testing, the discovery of genetic mutations that drive NSCLC is rapidly improving the outlook for some patients in stage 4 disease. This is significant because almost 40% of lung cancer diagnoses are stage 4 patients. One of the first breakthroughs was the discovery of the EGFR (epidermal growth factor receptor) mutation, which is present in about 10 percent of patients who are diagnosed with lung cancer in the United States (interestingly more common in patients with adenocarcinomas and no prior history of smoking, as well as in women and those of Asian descent).

I remember being at the American Society of Clinical Oncology (ASCO) conference in 2004 and the buzz surrounding a drug called Gefitinib (Iressa). The FDA had approved Iressa in May of 2003 for treatment of Non-Small Cell Lung Cancer (NSCLC) and it was notable that in clinical trials the drug worked spectacularly well in about 10% of lung cancers patients but failed to help the rest. No one could figure out why. Then researchers figured out that most people who responded to Iressa had similar genetic mutations in their tumors. A later study extended the findings in EGFR research to a related drug, Tarceva, which was awaiting approval by the FDA.
The two groups of Harvard researchers, one at Massachusetts General Hospital (MGH) and one at Dana Farber Cancer Institute did a deep dive into the data regarding lung tumors from patients who responded to Iressa and those who did not. Most responders had the EGFR mutations. Non-responders did not. The laboratories began offering a test to detect the mutations and scientists speculated they could become widely available in the near future. MGH had a clinical trial that was testing patients for the mutations as a predictor of their response to Iressa as an initial treatment. Iressa wasn’t usually the first option; it was typically given to lung cancer patients who didn’t respond to chemotherapy. Now that scientists could explain the drug’s effectiveness in some cases, there was hope that they could better predict who would respond to them in the future and that lessons from Iressa and Tarceva could be applied to other cancers. This is when targeted therapy began to become a reality.
Iressa and Tarceva are part of a relatively new class of drugs known as targeted drugs, which are different from traditional chemotherapy drugs because they are designed to specifically hit cancer cells. Unlike chemotherapy drugs which kill healthy and cancerous cells, targeted drugs are supposed to kill only cancer cells. Until the mid-2000’s, treatment options for lung cancer were mostly limited to surgery, chemotherapy and radiation. Now, people diagnosed with lung cancer have newer, more personalized treatment options. The goal of targeted therapy is to accurately target your individual tumor, which hopefully leads to more effective treatments and less side effects.
Thankfully screening has become an increasingly standard part of the diagnostic work-up for NSCLC, and is useful in choosing between standard chemotherapy and targeted therapies. EGFR-targeting drugs — which include Tarceva (erlotinib), Iressa (gefitinib) and Gilotrif (afatinib) — are now used in the first-line treatment for metastatic lung cancer patients. Patients are able to get a treatment that matches the mutation that has been identified through a molecular test of their tumor. While most lung cancer patients with EGFR mutations who respond well to targeted treatments ultimately develop resistance to the drugs after a year or so as the cancer finds other ways to grow, newer drugs are being evaluated to be used as second-line treatments. This is why it’s important to have tumors continuously tested during treatment to detect different mutations that evolve during treatment. For example, Tagrisso (osimertinib) is approved for patients with a specific EGFR mutation called T790M who relapse after being treated with a different EGFR drug. A similar drug called rociletinib (CO-1686) is in late-stage trials in patients with the T790M resistance mutation.
I saw first-hand this process of genetic testing, and the resulting treatment when a good friend of mine was diagnosed with stage 4 lung cancer. He went to the hospital and started chemotherapy treatment. Within 24 hours he was on a ventilator fighting for his life and not responding to the chemo. Test results showed that he had the EGFR exon 19 mutation and his regimen was immediately changed from chemo to Tarceva. He started responding and was off the ventilator breathing on his own within 2 days. We were all blown away with how quickly he responded to the targeted treatment. While unfortunately in his case it was too late to save his life, it did show me how remarkable the response was to a targeted therapy. It also convinced me that every cancer patient deserves to get molecular testing to identify the best course of treatment, which may be a targeted therapy such as Tarceva.
#CancerResearchEvangelist
#PrecisionMedicine

Friday, January 6, 2017

What's Next for the CancerMoonshot?


Vice President Joe Biden will be leaving office in 2 weeks. This has me thinking about what role he will play in the cancer community moving forward.
I’ve been optimistic about increased cancer research funding and advances in targeted treatments since President Obama announced his Precision Medicine Initiative (PMI) in early 2015, a research effort focusing on bringing precision medicine to many aspects of healthcare. The mission statement of the PMI is “To enable a new era of medicine through research, technology, and policies that empower patients, researchers and providers to work together toward development of individualized care”. In his budget for fiscal 2016 he included $216 million in funding for the initiative for the NIH, the National Cancer Institute (NCI) and the FDA.  I was even more enthusiastic when in his 2016 State of the Union, Obama called on Vice President Biden to lead a new, national “Moonshot” initiative to eliminate cancer as we know it. He launched the National #CancerMoonshot asking for, among other things, $1 billion to provide funding necessary for researchers to accelerate the development of new cancer detection and treatments, with the ultimate goal “to make a decade’s worth of advances in cancer prevention, diagnosis and treatment in 5 years”.
And since the launch of the initiative, Biden, the Cancer Moonshot Task Force and a Blue Ribbon Panel of experts have engaged thousands of cancer patients, caregivers, clinicians, healthcare organizations, advocacy groups, researchers, technologists, and industry leaders in support of the bold mission. In October Biden presented the Blue Ribbon Panel Report, describing 10 transformative recommendations for achieving this ambitious goal. Among the 10 recommendations are support for cancer research including immunotherapy, childhood cancers and a better understanding of tumors – how their cellular and genetic makeup shapes a patient’s response to drugs and how tumors evolve to develop resistance. The report also included announcement of new commitments from both public and private sectors. For example, the NCI, Microsoft and Amazon Web Services announced a collaboration to build a model for maintaining cancer genomic data in the cloud to be available for researchers. And Uber and Lyft offered to expand support of affordable and reliable transportation for cancer patients to address the issue of patients missing appointments. In all, over 70 public-private partnerships were formed, committed to the Cancer Moonshot. And the passage of the 21st Century Cures Act in December of 2016 provided for $1.8 billion reserved for the initiative – very encouraging news.
Fast forward to January, 2017 – what’s next for the #CancerMoonshot program and for cancer research and treatment overall? There is so much uncertainty with a new administration taking over in a couple weeks. I have concerns about the commitment to cancer research, and to affordable care – the cost of cancer treatment. Oncologists are already worried about the cost of treatment. Newly approved cancer drugs cost an average of $10,000 per month, some over $30,000 per month. Patients typically pay 20 to 30 percent out of pocket for drugs, so an average year's worth of new drugs would cost $24,000 to $36,000 in addition to health insurance premiums. This has to be addressed. I understand the pharmaceutical companies invest billions and need to recoup their costs. But there needs to be concerted effort between pharma, insurers, providers and the government to help patients afford these breakthrough treatments. With Republicans now controlling the White House and Congress, it’s unclear what direction the government will go to address any of this. What role will Joe Biden play once he leaves office, and how can we keep the momentum and spirit of collaboration moving forward? Because, as Douglas Lowy, MD, acting director of the NCI said, “the vice president has galvanized the community to move forward so we can greatly increase our ability to prevent, diagnose, and treat cancer”.
I believe one thing is clear. Joe Biden will remain committed to cancer and there is no greater ally to the cancer community. He is said to be forming a nonprofit, currently being called the Biden Cancer Initiative, but the final name could be different. Biden recently said his nonprofit group will focus on many important Moonshot issues including the need to break down the “silos” in cancer research and sharing research data and medical records more widely. He also has talked about boosting participation in clinical trials and the racial disparities that exist in diagnosis and treatment. Biden has been steadfast in his commitment, even in the face of critics who claim beating cancer is far more complicated than putting a man on the moon. He assembled a “Who’s Who” list in cancer for his task force and Blue Ribbon Panel. He brought together all stakeholders, including patients. He has pressed ahead, meeting with researchers and clinicians, repeatedly calling for greater data sharing and collaboration. He lost his son Beau to brain cancer in May 2015. I met him in September 2015. He was very thoughtful and he spoke so eloquently about his losing his son and his determination to lead the way.
We need someone to be the driving force and I have every reason to believe that Joe Biden is the right man to lead this effort to increase collaboration in the cancer community. Whatever direction the new administration may take, I hope Joe Biden will remain the beacon of hope that we can make true precision medicine a reality someday. And let’s hope he also helps energize the philanthropic community to support cancer research.
#CancerResearchEvangelist

 

Friday, December 16, 2016

Precision Medicine: Where Are We In Lung Cancer?

Lung cancer is the most common cause of cancer mortality globally, responsible for nearly 1 in 5 cancer-related deaths, or an estimated 1.6 million people. In the U.S., lung cancer is by far the leading cause of cancer-related death among both men and women; more deaths are caused by lung cancer every year than by breast, prostate, and colon cancer combined.  But after years of modest growth in new treatment options, there is much cause for hope. In 2015, the FDA approved six new drugs for the treatment of lung cancer—a one-year record – including two new immunotherapy drugs, nivolumab (Opdivo®) and pembrolizumab (Keytruda®). These approvals were landmark events for the treatment of lung cancer in 2015.

And the scientific evidence is accumulating that genomic testing and targeted therapies for lung cancer patients, particularly those who have advanced, or metastatic non-small cell lung cancer (NSCLC) make a significant difference in outcomes.  The most useful biomarkers for predicting the efficacy of targeted therapy in advanced NSCLC are genomic alterations called "driver mutations”.  Genomic tests for driver mutations have become an increasingly standard part of the diagnostic work-up for NSCLC patients, and the testing is useful in choosing whether a patient receives chemotherapy (if there is not a targetable driver mutation) or an FDA-approved targeted therapy up-front.  The best characterized of these biomarkers are epidermal growth factor receptor (EGFR) mutations and (anaplastic lymphoma kinase) ALK translocation. Identification of these biomarkers has led to highly targeted treatments that have resulted in major advances in prolonging survival - without the harsh side effects of chemotherapy. Patients with specific genetic mutations may benefit from targeted therapies such as the EGFR blockers erlotinib (Tarceva®), afatinib (Gilotrif®), and gefitinib (Iressa®), to name a few.
Lung cancer treatments are advancing so fast that it’s important to get tested to find out if a patient has an identifiable mutation. Patients with advanced NSCLC, and their caregivers need to have the conversation with their care team about getting tested and understand the abnormality that is causing the cancer. If a therapy exists patients are having good outcomes. If there is not a targetable mutation, patients can find clinical trials that may help prolong life. Not every driver has an effective treatment, but according to the LCMC II study nearly 60% of NSCLC adenocarcinoma patients are likely to have a driver gene that can be targeted with approved drugs or those in a clinical trial. This is amazing progress in lung cancer treatment, and made possible by cancer research. The basic research done 10 years ago is leading to breakthroughs today. It’s why I support the vision of the #CancerMoonshot program’s aim “to make a decade worth of advances in cancer prevention, diagnosis and treatment in five years."
A recent article by Dr. Lecia Sequist (Associate Professor of Medicine, Harvard Medical School) and Dr. Joel  Neal (Assistant Professor of Medicine–Oncology, Stanford University/ Stanford Cancer Institute) shares good information about the professional medical organizations that recommend analyzing either the primary NSCLC cancer tumor or a metastatic tumor for EGFR and ALK, regardless of patient characteristics (such as age, race, or smoking history). And The National Comprehensive Cancer Network guidelines for metastatic non-small cell lung cancer strongly recommend testing for alterations in EGFR, ALK, and ROS1 genes, as well a broader genomic panel to look for driver genes that might have clinical trials available. In this shifting landscape in lung cancer treatment, molecular testing may identify a targeted treatment, or help find a clinical trial. Patients need to be their own health care advocates.
#CancerResearchEvangelist

Monday, November 28, 2016

Are We Ready For The Next Giant Leap?



I recently attended an event in Boston organized by Elsevier called “The Next Giant Leap” that brought together oncology experts to talk about cancer research and the goals of the White House Cancer Moonshot initiative. The event featured a panel of experts, each approaching cancer research and care from a different perspective, and was centered on the President’s Cancer Panel Report (the Report).  The panel discussed improving access to clinical trials, the impact of data sharing on patients and care providers, and how to break down silos and improve collaboration across all sectors.


 
The theme of the Report was how to improve cancer-related outcomes with connected health. This is an ambitious undertaking: how can we use technology to promote cancer prevention, enhance the experience of cancer care for patients and providers, and accelerate progress in cancer research. As the #CancerResearchEvangelist and a patient advocate, my personal interest in attending was to learn more about how patients can get access to clinical trials and how research can bring more targeted therapy - #PrecisionMedicine - to patients. I’m a strong proponent of the #CancerMoonshot program and its aim "to make a decade worth of advances in cancer prevention, diagnosis and treatment in five years." When I met Vice President Joe Biden last year, I was struck by his sincerity and determination.  I applaud Elsevier for bringing together experts to be a part of the national conversation about cancer research and hope that we will see more of these events in the future.
Most will agree that cancer is an area of healthcare that can benefit from improved coordination, communication, and access to information – sharing and integrating data can expedite scientific discovery and more effectively prevent, research and treat cancers. However, according to the Report, “technical, financial, policy, and cultural barriers have precluded optimal development and use of connected health technologies for cancer.” My big questions are how do we break down the silos and facilitate the true collaboration and sharing of data to help advance research. Unprecedented amounts of data about cancer patients are being collected in medical records, in research studies, and by individuals themselves. Traditionally this data remained wherever they were collected and generally were used in limited ways only to serve the specific needs of whoever collected them. All of these silos represent a significant missed opportunity. Connected health technologies have an important role to play by facilitating the linking of data sets and creating tools that enable researchers, clinicians, and patients to use data in meaningful ways. To achieve the development of a national infrastructure to support sharing cancer data, technical and logistical challenges to data integration must be overcome, and the cancer community must foster a culture of collaboration that encourages data sharing and free exchange of ideas. Of course, patient privacy and security of data continue to be issues of concern that must be addressed to facilitate true data sharing and collaboration. I also believe that the government and cancer organizations must balance competition with the goal to make the next big discovery to help patients. The President’s Cancer Panel urges all stakeholders - health IT companies, healthcare providers, researchers, government agencies, and patients - to collaborate in using connected health to improve the experience of cancer care for patients and providers.
Access to Clinical Trials
Clinical trials are essential for advancing knowledge about cancer and for developing better, more targeted treatments for cancer. However, in the U.S. patient participation remains one of the biggest challenges to their success (estimated at less than 5% participation in trials). Although surveys show that patients would be willing to participate in clinical trials if available, many obstacles continue to prevent  more broader enrollment – primarily patients not being aware of availability, difficulty determining if they are eligible, and lack of provider referral. The President’s Cancer Panel has identified the tremendous potential of connected health to expand access to clinical trials. A clear role has emerged for online tools – and with social media – to quickly and broadly mobilize communities to participate. In fact many non-profits, advocacy groups and pharmaceutical companies are using social networks like Twitter and Facebook to connect with patients. However, the amount of information and complexity of trial eligibility can be daunting for patients. And matching a patient to specific clinical trial criteria often requires access to the patient’s disease profile (diagnosis, type and stage of tumor, etc.). The Elsevier panel discussion on trials focused on the need for education, patient stories, incentives and the involvement of patient communities (i.e.: the ovarian cancer community of patients connecting to share their experiences).
Next-generation resources that help facilitate the ability for cancer patients to be matched to a clinical trial based on their profile have the ability to transform the way we currently enroll patients. The goal is for these tools to facilitate automated clinical trial matching based on each patient’s personal disease profile. It is my hope that this will also increase the participation beyond the current 5%, and help lead to faster discoveries and ultimately cures. The President’s Cancer Panel Report highlighted one such next-generation online resource for clinical trial matching – The Cure Forward Clinical Trial Exchange. Rather than searching for trials themselves, patients can create their own personal profiles. Based on the molecular testing information and trial preferences provided by the patient, trial recruiters can review this information and contact patients who may be eligible for a given trial. If a patient hasn’t already had molecular testing done, Cure Forward can recommend and direct patients to laboratories that can do the testing. And, as recommended by the Elsevier panel, education and connecting with other similar patients is also an integral part of the process. Cure Forward can connect patients with cancer professionals, called Patient Guides that can help them personally navigate the clinical trial process. 
I’m grateful to Elsevier for inviting me to The Next Giant Leap event in Boston, and for the cancer expert panel for their insights. We truly are all in this together.
#CancerResearchEvangelist

Tuesday, November 8, 2016

Cancer Research Evangelism and The Power of NOW


I am building momentum in my role as the Cancer Research Evangelist - with the help of many amazing people. This is not in the religious sense, not preaching about the gospel. No, another meaning for evangelist is “a zealous advocate of something”. Years ago, Guy Kawasaki became the Chief Evangelist at Apple, and popularized the word evangelist in marketing the Macintosh for Apple and the concept of evangelist marketing. In 2006 he wrote about the art of evangelism, and even today it resonates with me because its tenets are perfectly suited for advocating for cancer research. I’ve been writing for months about the need for someone to tenaciously advocate, or “evangelize” about supporting scientists that have to spend 75% of their time fundraising. I was at the CANCERx conference recently and heard Dr. Phil Sharp from MIT reinforce the importance of basic cancer research, and how the NIH needs to lead the way.

With this in mind, I’m looking forward to speaking at Jeff Pulver’s next conference, the #140Conf, “State of NOW” on November 14th in Los Angeles. Jeff is a VoIP pioneer, communications visionary, and connector. I met Jeff last year at the Gratitude and Trust conference he co-hosted in NYC, and am a believer in his vision for real time web communication. Since June 2009, Jeff has brought together people from many different backgrounds, from all over the world to share their stories. He calls it “The State of NOW Experience”.  In Jeff’s words, “these conferences provide a platform for people to listen, connect, share, and engage with each other, while collectively exploring the effects of the real-time web on business and in their personal lives.”

I am so grateful for the opportunity to speak at the conference about how I became the Cancer Research Evangelist and why it matters. I’ll talk about how the real time Internet has helped me connect with an amazing community of people who share my passion for supporting cancer research. I call it surrounding myself with good people. People that care.

#Gratitude

Friday, September 16, 2016

Precision Medicine: Are We Making Progress?


 
The Precision Medicine Initiative, launched by President Obama in his 2015 State of the Union speech, aims to extend the concept of precision medicine — the right treatment or prevention plan for the right person at the right time — beyond cancer, where we have seen great progress, to all health conditions. A key part of this effort involves building the Precision Medicine Initiative Cohort Program, a group of at least 1 million Americans who will donate data about themselves, everything from health records to genetic sequences and diet surveys. FDA Chief Dr. Robert Califf thinks that number should be as high as 100 million. Perhaps this may be possible. In a recent survey published in PLOS One  more than half of the 2,600 respondents (54 percent) said they would definitely or probably be willing to take part in the program. 

The President called for $215 million in fiscal year 2016 to support the Initiative, which includes several components with efforts from across the federal government. Of this total proposed budget, $130 million was allocated to NIH to build a national,  participant group, called a cohort, and $70 million was allocated to the National Cancer Institute to lead efforts in cancer genomics. Cancer has shown the most promise in efforts to target treatments to the specific mutations of cancer patients. 

One such company leading efforts in helping patients by using precision medicine is Cure Forward, in Cambridge, MA. This is a small team with a vision “to create a platform to connect patients with genomic medicine, bringing the possibilities of precision medicine directly in reach. A way to use the best of technology to help people diagnosed with life-altering disease discover all of their options.  We want to make it easy for patients to understand the root cause of their conditions and put the knowledge to work. Get their data, find treatment options, including clinical trials.” I recently met with the Founder, Martin Naley, and my friend Alicia Staley, Patient Advocate to catch up on their progress. It’s an exciting vision to teach patients about molecular diagnostic testing, precision medicine, connect with other patients, and help them get into clinical trials. 

I’m optimist about the direction we are going with precision medicine. While some have been critical of Vice President Joe Biden’s “Moonshot”, his Summit showed that there are a lot of very smart people involved and getting behind the effort. Yes it is complicated, but once again shows the need for collaboration in the fight against cancer. As I have written about many times, “we are all in this together”. 

#CancerResearchEvangelist
#gratitude

 

 

Wednesday, August 24, 2016

Addressing the Problem of Drug-Resistant Cancer


Meet Johnathan Whetstine, PhD.
 
Cancer cells that stop responding to treatment (drug resistance) are a common cause of cancer deaths. Researchers are trying to understand how to treat resistance, and/or prevent it in the quest for the next generation of cancer therapies that can save lives. One such researcher, Johnathan Whetstine, PhD and his team in the Whetstine Laboratory at the Mass General Center for Cancer Research is studying how cancer cells become drug-resistant. They recently uncovered a protein that generates specific DNA fragments containing genes that cause cancer cells to become resistant to chemotherapy. This allows replicating cancer cells to grow and defend themselves against previously effective treatments. We all know how devious cancer cells are in trying to outsmart treatments.
The Whetstine Laboratory’s discovery was the first of its kind, and provides a new way to understand how cancer cells change their DNA content and potentially acquire the ability to become treatment resistant. In fact, their discovery identified a new protein to evaluate in tumors and directly relates to cancer cell response to therapy. Most recently, Dr. Whetstine’s group used a drug to target the protein and was able to block the extra DNA pieces associated with drug resistance. These findings illustrate the importance of evaluating this protein in tumors and demonstrate that this process does not occur randomly but can be directed and targeted by proteins within the cell. Dr. Whetstine’s group is currently uncovering additional genes and conditions that can generate extra DNA pieces involved in cancer cell drug resistance. This work holds promise for the development of new strategies to block resistances to chemotherapies and targeted therapies with broad and profound implications for many different types of cancer.
Tumor cells contain extra copies of DNA that ultimately contribute to their lack of response to chemotherapeutics and aggressive behavior. The Whetstine Laboratory is working to uncover the genes and proteins that promote copy gains of DNA regions and stimulate resistance to help identify novel drug targets associated with aggressive drug resistant cancer and provide novel biomarkers to evaluate in patients during the course of therapy so that resistance may be predicted earlier. The Whetstine Laboratory has now unlocked a way to better understand copy gains related to tumorigenesis and have firmly established that these events are regulated.
The Whetstine’s Laboratory is another of the research programs that needs philanthropic support – in this case to investigate how treatment resistance occurs, how we can think about blocking drug resistance and how we can help identify patients who are most vulnerable to emerging drug resistance. Their studies are currently aimed at addressing this question in lung cancer, ovarian cancer, myeloma, breast cancer and neuroblastoma.
One of the Disruptive Dozen
The culture of innovation at Massachusetts General Hospital and Brigham and Women’s Hospital —throughout all of Partners HealthCare and collaborating institutions such as Dana-Farber Cancer Institute—naturally fosters a good deal of discussion about new “disruptive” technologies and which ones will have the biggest impact in bringing novel complex health care products and services to greater levels of affordability and accessibility. The mission of Partners clinicians and researchers to provide the best care for patients drives a continuous dialogue on what state-of-the-art medical technologies are just over the horizon. The Disruptive Dozen was created to identify and rank the most disruptive technologies that Partners leading faculty feel will break through over the next decade in cancer care.
Johnathan Whetstine was recognized for his work at the Partners World Medical Innovation Forum in April as one of the most promising technologies (number 5) that will have significant impact on cancer care in the next 10 years. He and his wife are also our friends, and fellow MGH one hundred honorees. #gratitude
 

 

 

 

 

Thursday, July 28, 2016

Putting a Stake in the Ground

 

I just experienced a powerful example of a community coming together in the interest of making a difference in supporting cancer research. And with the help of this community, we raised over $120,000 for research in the laboratory of Dr. Daniel Haber at Mass. General Hospital.  I’ve written about how individual cancer researchers in labs across the country spend up to 75% of their time on fundraising when they should be spending 100% of their time in the lab doing what they do best. I’m ever more committed to identifying innovative research in Boston, and directing funds into these laboratories. The lacrosse community in greater Boston helped me put a stake in the ground because we showed it’s possible to identify a cancer researcher doing innovative work, then educate and rally a community to support a specific, tangible project.  We united the lacrosse community, and told our donors exactly where their money would go and the impact their dollars will have.  
 


The lacrosse community in greater Boston – The Boston Cannons professional team, youth teams, former college players and sponsors all came together for the cause. I am grateful for everyone who played a part in the success of what the Cannons called “Cannons Fighting Cancer”.  Ian Frenette and his team put in a lot of hard work and were amazing to work with - and the Cannons also made a generous contribution.  And I’m so grateful to MGH Cancer Center, New Balance, Warrior, Eastern Bank , US Lacrosse, NHYLA, MBYLL and so many former players and individual donors who helped us, and supported the effort. The Lax Sports Network also helped promote the event through a live broadcast – and I appreciated the opportunity to be interviewed during the charity pick up game! 
 


Personally it was also a realization that I will continue to go forth as the Cancer Research Evangelist, with a focus on Boston, identifying promising research, and connecting with communities that can help support these specific labs. I firmly believe that we can help fill the funding gap that exists for these folks, and help free up their time to do their laboratory work. One researcher told me that just $100,000 can help support a post doc researcher in his lab, plus all supplies/reagents, for one year. He told me how important that is for him. Think of what $1 million would mean to his lab. One post doc for 10 years, 2 post docs for 5 years…you get my point. Remember, researchers may work at big institutions, but their lab is not supported by the institution – they are responsible for funding their own labs. And with NIH grants almost impossible to get (11% chance) and the time it takes to write grants and fundraise – the need is clear.  
 
 
So, I look forward to the finding the next community to help me connect with a research lab in Boston. I have a few labs in mind that are doing truly innovative work. I want to focus on mid-career researchers that are entering the most challenging part of their careers in terms of getting funding (see my next blog post for more details). I support research for ALL cancers at institutions in Boston, including Mass. General Hospital, Brigham & Women’s Hospital, Dana Farber Cancer Institute, MIT Koch Institute, Broad Institute and more. We are all in this together. #gratitude

 

 

 

Thursday, May 26, 2016

What An #EverydayAmazing Week It's Been


I love Boston.  And I’ve written about my cancer journey and being the #CancerResearchEvangelist. This week reminded me of what I love about the city and this region. It started last Saturday when I was invited to by Ian Frenette, the President of the Boston Cannons professional lacrosse team to attend a game at Harvard Stadium with my boys.  We had the privilege of watching the game as VIPs at the Optum Champions Club. What a first class experience, and great hospitality by the team, and the opportunity to meet team majority owner Rob Hale.
 

I’ve been working with Ian and his team on an important initiative through Play4TheCure, the fundraising platform of the National Foundation for Cancer Research (NFCR). NFCR and the Cannons are partnering on a new initiative to unite the lacrosse community with the medical and scientific communities in Boston to raise money and awareness about cancer research. We just announced the partnership today, part of the Cannons Fighting Cancer initiative where NFCR is the primary beneficiary this year. We are excited to shine a bright light on the institutions in Boston that are at the forefront of cancer research and treatment. I’m grateful to the lacrosse community and the Boston Cannons to help me, the #CancerResearchEvangelist, support research in the laboratory in Boston.

 
In addition, I was selected by the Massachusetts General Hospital Cancer Center (MGH) as an honoree of the one hundred #EveryDayAmazing individuals — caregivers, researchers, philanthropists, advocates and volunteers from around the globe — whose commitment to the fight against cancer inspires us all to take action. My wife and I attended the gala in Boston last night…and what a night! (here's our #EveryDayAmazing video). The commitment, spirit and pride in the Boston healthcare community was evident – from the staff and volunteers of MGH to my fellow honorees, to the donors and sponsors at the event to support the MGH Cancer Center. We were warmly greeted, and led to a private VIP reception for honorees and sponsors. It was there that I met several honorees including fellow advocate Nate Solder from the New England Patriots, Rich and Mary Shertenlieb, from 98.5 the Sports Hub, and my friend, MGH researcher John Whetstine. Then Laura Renfro, daughter of Larry Renfro, CEO of Optum, welcomed us all – Optum is the Visionary Sponsor of the gala, and Larry and Rosie Renfro were the chairs of the 2016 event committee. They and Optum are generous and committed supporters of the MGH Cancer Center. I immediately saw the connection to the Boston Cannons – Optum is a big supporter of the team (I was just in the Optum VIP club at the game), and the team is committed to fighting cancer. and supporting research in Boston. I introduced myself to Laura and thanked her for her family’s commitment to cancer research. And we talked about how NFCR supports research at MGH - researchers like the Director of the MGH Cancer Center, Dr. Daniel Haber.


 
 

Once inside the grand ballroom, the night became magical as different honorees were recognized and videos were shown highlighting some of the more compelling stories. Stories of some of the 100 #EveryDayAmazing people who are making a difference. Jack Connors was the MC because Larry Renfro was unable to attend. He introduced the keynote guest speaker, Dr. Jill Biden, Second Lady of the U.S., who gave an inspiring talk about her family’s commitment to fighting cancer. After her speech, I went over and introduced myself to her and thanked her for coming to the event. She was kind, friendly and grateful for the work that I do to help the cause, and she wanted to find out my story. I told her that I had met her husband at a GBM event, and appreciated their commitment to the #CancerMoonShot initiative. So then feeling inspired by the encounter with Dr. Biden, I introduced myself to Jonathan Kraft, honorary chair of the one hundred, and President of the Kraft Group, which owns among other businesses, the New England Patriots. Just as Dr. Biden, for Jonathan it wasn’t about him at that moment – he wanted to know about my work, and why I was one of the Every Day Amazing people there. His passion for the cause and for MGH and Boston was so clear – he was so sincere and kind and I really appreciated our conversation. I told him that I was the “#CancerResearchEvangelist at NFCR and that we support Dr. Daniel Haber, Dr. Rakesh Jain and Dr. Alice Shaw at MGH and he knew that I was just like him at that moment – one of the people who appreciate and care about the people making a difference in healthcare in Boston and at MGH. And Jonathan told me about his good friend Larry Renfro, this year's event chair, and Optum’s commitment to MGH and Boston…and I thought of the Cannons and my work at NFCR, and what a small world Boston is.


 

Finally, I introduced myself to Dr. Peter Slavin, President of MGH. You guessed it…he wanted to hear my story, what my work involved, my connection to MGH and why I was being honored. Once I told him of the MGH researchers that NFCR supports, including that Alice Shaw was going to be featured on the cover of our next annual progress report, he said “you know Alice Shaw is here tonight, let me go get her for you so you can say hello.” And off we went, me and the President of MGH, as he spent 10 minutes walking me through the crowd because he wanted to make sure that Dr. Shaw knew I was there.  Talk about #gratitude. And there were more encounters with very compassionate people all night. But clearly I saw the meaning of #EverydayAmazing. We really are all in this together. I love Boston. And I am proud of the work I am doing representing NFCR and making connections to support researchers in Boston. #gratitude