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



 

Friday, May 20, 2016

If Not Us, Who? If Not Now, When?


We’ve all heard this quote, attributed to various people, most notably John F. Kennedy. It’s been used in a variety of contexts including other politicians. I even used it when I served on the School Committee in my town.  But it is so appropriate right now to think about this in context of the state of research & development investment in the United States, and in particular, basic cancer research.

I was recently promoted to Cancer Research Evangelist at the National Foundation for Cancer Research, and in this role I will continue to be the voice for the urgency of funding for basic research.  I am determined to keep educating the public about the work being done in laboratories today that will lead to discoveries tomorrow. I've introduced you to many of these researcher on this blog. The U.S. is falling behind on investment in R&D to countries like China.  China’s total expenditure on research and development (R&D) has increased by 23% a year on average over the past decade, and the central government’s expenditure on science and technology is estimated to overtake the U.S. by 2019.  I hope and will continue to advocate for more U.S. government support of basic cancer research.  Vice President Joe Biden’s Moonshot Initiative is a positive step forward. 

But more importantly, I will continue advocating for more philanthropic support of basic cancer research. The type of seed funding that NFCR has been providing for 43 years. Putting money directly into the laboratory, allowing scientists the freedom and flexibility to experiment on new ideas that can lead to the next big breakthroughs. There are so many people and institutions that have achieved great success in our country who have resources necessary to fill the gap in government funding. People like Oracle Founder Larry Ellison, who recently pledged $200 million to USC to fund a cancer research center. Thank you for this gift. #gratitude 

I recently had lunch with a brilliant researcher in Boston who told me that a gift of $100,000 can support a young researcher on his team and the reagents necessary to do experiments for one year. Think of the impact of $200 million? So, “if not us, who?” Other countries like China. “If not now, when?” We will see the impact 20 years from now if we don’t continue to make these investments now. 
#CancerResearchEvangelist


Friday, May 6, 2016

Why Philanthropy Matters


We’ve all heard the phrase “the system is broken”. Unfortunately, this could be referring to many things – politics, education, law, government, you name it – but the “system” of funding basic cancer research truly is broken.  Watch the news and you will think we are making progress in the fight against cancer – we hear about immunotherapy and nanotechnology, precision medicine, the moon shot, etc.  There are new FDA approvals of new drugs from big pharma, biotech companies going public, venture capital supporting up and coming companies, etc. And yes, we are definitely making progress. But I believe that most people don’t realize that we could accelerate this progress if we put more seed money into the hands of researchers on the front lines. The system really is broken.  And the reality is that philanthropy is critical in our current funding model in order for us to help advance innovation – to help scientists work on discoveries that just don’t exist today. 
 
I’ve spoken to several scientists doing basic cancer research and what I hear is very consistent – they spend 70-80 percent of their time on raising money for their lab, writing grants or seeking donations from private sources. The institutions where the scientists work are not providing full funding for their lab, and this is what I think most people don’t realize. These scientists are under extreme pressure to find money to keep their lab operating. Do we really want our brilliant scientists spending the majority of their time on fundraising? I’d rather they spend 100% of their time in the lab, wouldn’t you?  And,  if you are a cancer scientist, even at a major hospital or university, and you get  funding from a National Institutes of Health (NIH) grant, there is an almost 90% chance you may not get another grant when it expires. Yes, your chance of getting an NIH grant in oncology is about 11%. So the responsibility to keep the lab operating (funded) is on the scientist. I suppose it is like a law firm where you have to provide billable hours to support your position with the firm, but it feels different to me when it is about focusing time in a laboratory. I think we should trust that the scientists need the time to test their ideas.
 
 
All of this was on my mind when I attended the World Medical Innovation Forum in Boston last week. The Forum is a gathering of senior corporate, investor and academic leaders, organized by Partners HealthCare Innovation, a division of Partners HealthCare dedicated to advancing the commercial application of the capabilities of Partners’ academic medical centers. The Forum highlighted topics such as emerging cancer innovations in immunotherapy, epigenetics, early diagnosis, combination therapies, curative drugs, and the role of patients in innovation. The last part of the Forum was a showcase of the most promising cancer technology innovations from around the world — the 12 technologies with the potential to revolutionize cancer treatment and patient care over the next decade called “The Disruptive Dozen.” And this is what got me revved up about how philanthropy really matters if we want to advance these identified promising ideas.
 
 
The bottom line is, there are “disruptive” technologies that have been identified by thought leaders at institutions at this Forum such as Partners Healthcare, Massachusetts General Hospital, Brigham and Women’s Hospital, Dana-Farber Cancer Institute, and Harvard Medical School. The question is, how can we provide the resources to the scientists/researchers behind the scenes to bring these ideas to patients – and the sooner the better? The reality is we need philanthropic support. This is why I am on a mission to educate the public – and those individuals, foundations and companies that have the resources to make a difference – to help bring technologies like the “Disruptive Dozen” to cancer care. I’m grateful for those philanthropists who have already answered the call to support these researchers. People like Sean Parker, thank you.  My goal is to find others who may not be aware of these opportunities to make an impact on the fight against cancer. We are all in this together.
 
#CancerResearchEvangelist

 

Thursday, March 31, 2016

These Women are Resolved in the Fight Against Cancer

I am involved with many special events that are raising money for cancer research at the National Foundation for Cancer Research (NFCR), and I am so grateful for all of them. One in particular that I attended this month in Washington, DC was the Daffodils & Diamonds 2016 Luncheon to benefit NFCR at the Columbia Country Club. What an inspiring day – over 300 women gathered in resolve to raise money for cancer research, and share the emotional bond of hope for a cure.
The Daffodils and Diamonds Luncheon was founded by Bethesda’s Alice-Anne Birch in honor of her mother and sister, both of whom succumbed to the disease. Alice-Anne was co-chair this year with Anne Muir, also of Bethesda. The luncheon is held to raise funds for NFCR, specifically for breast and ovarian cancers.  The Daffodils and Diamonds Committee is a group of strong and accomplished women who have resolved to move forward together in the fight against cancer. Thanks to their hard work and generosity, hundreds of thousands of life-saving research dollars have been generated for NCFR’s advanced cancer research. Last year the event raised over $100,000 for seed money for research.

 
This year was particularly special for me and for all involved. This year marked the 35th anniversary of the luncheon – wow 35 years! It also announced the establishment of the Daffodils & Diamonds Accelerator Fund. The goal of this designated fund is to allocate funding to promising cancer research projects that the Daffodils & Diamonds committee will select for investment through NFCR. It is exciting because it allows these amazing women to have the power to put seed money into the laboratory of their choice, with the hope that this will accelerate the development of that technology. This is a unique and targeted funding model, and one that is perfectly suited for NFCR. For over 40 years NFCR has been providing consistent, continuing, sustainable, reliable funding for research. Check out some of the researchers that NFCR has been funding for many years.
 
This year was also bittersweet as my friend, dear Anne Muir delivered A Message of Hope, paying tribute to her son Stephen, who succumbed to stage 4 Non-Small Cell Lung Cancer (NSCLC) in September at age 45. Stephen had been elected to the NFCR board just a week before he was diagnosed. Anne’s message of hope was that, while her son’s cancer was found too late, there is promise of new discoveries in lung cancer treatment and diagnosis, and with the help of the 300+ women of Daffodils & Diamonds, the monies raised over the past 35 years have made and will continue to make a difference as we all seek to find a cure for cancer.
I was also humbled to be recognized at the luncheon as they paid tribute to me and Beverly Goering in the “Salute to Survivors”. What an honor to stand up in front of these dedicated women who work so hard on this event and are so committed to cancer research. My wife and I were blown away by the heartfelt response from the women at our table, which also included 3 other survivors. Special thanks also to Alison Starling, News Anchor, WJLA-TV, ABC7 in Washington, for hosting the luncheon for the 11th time, and for telling my story.
 
So once again, I am inspired by the commitment of people like the women of Daffodils & Diamonds, who show that we are truly “all in this together”. We all can make a difference in supporting the basic scientific research (seed funding) that has led to the discoveries of today, and the will lead to the discoveries of tomorrow. I am just one part of this ecosystem, and will continue serving as the #CancerResearchEvangelist bringing people together to support scientists in the laboratory.
 

Friday, March 4, 2016

The Kids Can Only Do So Much, Right?


I often hear my friends and colleagues lamenting about the younger generation and how they act so “entitled”.  I’m sure you’ve heard this too, how they were coddled as kids, grew up in an environment where “everyone gets a trophy”,etc.  I always disagree with them because I have 3 boys, now in their early 20’s, and they do not act entitled or coddled. But last month I witnessed a high school girls basketball program that not only disproved this notion of entitlement, but blew me away with their generosity and dedication to a cause. I’m talking about the Central Catholic girls freshman, JV and varsity basketball teams in Lawrence, MA.
This group of amazing girls and their families rallied the Central Catholic community of students, coaches, administrators and families and friends to Play4TheCure, a signature program of the National Foundation for Cancer Research. They were playing in honor of Marilyn Joy, mother of last year's captain and teammate, Toni Joy. Marilyn is facing a courageous battle with stage 4 Pancreatic Cancer.  The Joy family has always been a great supporter of Central Catholic High School and the girls basketball program, so the girls stepped up to raise money for cancer research. And did they ever! They called the game “Jump Shots for Joy”, set up an online donation page, sold wristbands, held bake sales, and much more to activate their community. I had the honor of attending their game and got goosebumps watching all in-game activities including donations at the door, a dedication wall, halftime contests, and both varsity teams wearing self-designed Play4TheCure T shirts.


I met so many nice parents who were helping out at the game. And then I had the privilege of meeting the varsity team and their coach before the game. I told them how amazing they were, and how much I appreciated their hard work and commitment to supporting cancer research. They were so polite and attentive, just great kids. 100% of the funds they raised go to cancer research in the laboratory.
So these amazing girls prove that there are dedicated, hard-working, committed, thoughtful young people out there who are giving back and making a difference. Us adults can learn a lot from these girls at Central Catholic because after all, the kids can only do so much. Think of the impact we can have on our children if we invest in the seed funding for cancer research today. Research like the work being done by Dr. Daniel Haber at Massachusetts General Hospital in Boston. Because early seed funding for research today will pay off 10-20 years from now, and help save the lives of our children.
Here’s the punchline. These girls raised $7,080 that goes directly to cancer research in the lab! Thank you so much Central Catholic. Can’t wait to do it again next year. #gratitude

Thursday, January 28, 2016

Collaboration on the Court




When I met Brenda Frese, head coach of the University of Maryland women’s basketball team, in October 2014, I knew of her accomplishments as a head basketball coach, but I had no idea about the depth of what makes her such a special person.  I felt the same way when I met Dr. Curt Civin, a researcher at the University of Maryland, School of Medicine, when I met him in April of 2014.  Little did I know that Play4TheCure would be the program that would bring these two leaders together with me, and lead to a collaboration to make a difference in the fight against cancer. On February 28, 2016, Brenda’s team will Play4TheCure at the Xfinity Center in College Park, MD, to help raise money and awareness to support the National Foundation for Cancer Research (NFCR), which supports research in Dr. Civin’s laboratory.  And Dr. Civin will be on hand to cheer on the Brenda’s team.

It’s a natural connection because Dr. Civin spent 26 years at Johns Hopkins before moving to the University of Maryland, and in 2010 Brenda’s son Tyler was diagnosed with childhood leukemia, and treated at John Hopkins. Dr. Civin became well known and earned the 1999 National Inventor of the Year Award for his groundbreaking scientific discovery in 1984 of a method for isolating stem cells from other blood cells, a critical step in studying them and for transplanting these cells into patients. Discoveries from his laboratory are used today in both clinical bone marrow stem cell transplantation and leukemia diagnosis. 
 

So now, both Brenda Frese and Curt Civin are proud representatives of the University of Maryland. Bringing these two passionate leaders together to raise money and awareness for cancer research at NFCR through the women’s basketball team will show the power of true collaboration.  Both are mentors in their fields. Dr. Civin was one of two physicians to receive the American Society of Hematology’s (ASH) 2015 Mentor Award, which honors outstanding commitment to the training and career development of early-career hematologists. Since her first season at the helm when the team won just 10 games, Brenda Frese has guided Maryland to a National Championship in 2006, 12 winning seasons, 11-straight 20-win seasons, five 30-win campaigns and 11 trips to the NCAA Tournament.  Dr. Civin will be recognized at halftime, and Brenda will lead her team in the game. Both true representatives of a great university. #Play4TheCure #Gratitude