The Leukemia Lymphoma Society Blog

Raise Your Voice - Join Mission Day Online!

communityreply@lls.org — Fri, 24 May 2013 17:10:31 GMT

On June 4, hundreds of patients and LLS advocates from across the country will gather in Washington D.C. to meet with elected officials to spread the word about the need to find a cure for blood cancers and ensure access to affordable, quality and coordinated care for all blood cancer patients. No matter where you live, you can be a part of this movement!

Add your name to the Mission Day petition today and let your elected officials know that blood cancer patients are counting on them to support research and treatment options, and access to care, to help patients live longer, better lives-not someday, but today.

Take Action Now!

Minnesota Chapter Named One of Top 100 Companies to Work for in Minnesota

communityreply@lls.org — Thu, 23 May 2013 16:52:24 GMT

Congratulations to LLS's Minnesota Chapter, which is included among the 100 best companies to work for in Minnesota by Minnesota Business magazine. The chapter is featured in the June issue of the magazine, and has been invited to attend a celebration gala on June 6.

The magazine based its criteria on employee surveys, which asked questions such as "Why do employees think The Leukemia & Lymphoma Society is a great place to work?" and "What are some of the benefits, programs and perks of working at LLS?"

Employees had many positive things to say about their experience working at the chapter and LLS in general, according to anonymous quotes culled from the survey. Many of the comments focused on the LLS mission as a key motivator.

"I like working for LLS because there is a purpose behind every task. Whether it's updating a spreadsheet or meeting with a potential sponsor, the mission is at the forefront of everything we do," states one.

"Our leadership team supports us in all we do, there is support for new ideas within campaigns, an open door policy and a flexible work schedule that allows us to not only make time for our volunteers for but for our personal lives well," states another.

Others cited perks such as generous benefit packages and vacation time; strong guidance and support from the National office; and fun activities that build camaraderie among the staff, like "Friday Fun Breaks."

Chapter Executive Director Teri Cannon said the award is gratifying for her and her staff.

"We had a champagne toast when we find out we won," said Cannon. "We have a great work environment with a lot of positive energy."

Health Care Disparities Highlighted in Associated Press Article

communityreply@lls.org — Mon, 13 May 2013 19:21:15 GMT

The Leukemia & Lymphoma Society is pleased to highlight today’s major media coverage of an issue of critical importance to blood cancer patients, by influential Associated Press health care policy reporter, Ricardo Alonso-Zaldivar.

Alonso-Zaldivar’s article, “Huge Drug Cost Disparities Seen in Health Overhaul,” addresses problems LLS identified with California's new healthcare exchange.

Under the Affordable Care Act, individuals who don’t get coverage through their employer, and don’t qualify for Medicare or Medicaid, will be required to purchase health insurance through health insurance "exchanges" (now called "marketplaces") being set up in each state. Patients that enroll in California’s marketplace plan may be subject to excessively high co-insurance payments - especially those that require certain innovative, life-saving therapies.

For example, a patient in California with chronic myelogenous leukemia (CML) who takes one of the lifesaving daily standard treatments might have to pay co-insurance as high as 30% of the cost of the drug –amounting to as much as $2,000 a month. In comparison, New York State’s plan would limit copays to no more than $70 a month for the same medication.

LLS Senior Vice President of Public Policy Brian Rosen makes the point that "The intent of the Affordable Care Act is to make sure that all Americans have access to quality, affordable health care”… He adds that there is a danger that the insurance marketplaces "will discriminate against the patients with the highest medical need. That would completely undermine the spirit of the ACA."

CML patient Lisa Lusk, an LLS patient advocate who is also quoted in the article takes Tasigna®, another costly CML drug. Lusk is concerned that she will face high out of pocket costs for her medication when she returns to work, if she does not receive insurance through her employer.

"I'll just be working to pay for my medications," she states.

The article has been widely picked up by media outlets across the country today.

All Americans should be aware that decisions are being made now about how plans under the state health care marketplaces will work under the Affordable Care Act. Insurers have been provided little guidance on which specialty medications should be covered and how much a patient should be charged for these therapies, leaving cancer patients extremely vulnerable. LLS is issuing a "Call to Action" for you to share this AP article with your state legislators and governors. Please urge tell them to ensure that plans participating in the healthcare exchanges must guarantee all patients access to quality, affordable, coordinated care. Click here to find contact information for your legislators. ACT NOW!

Genomic Sequencing Leads to More Promising Developments for Blood Cancer Patients

communityreply@lls.org — Thu, 09 May 2013 21:47:57 GMT

(photo: Jeffrey Tyner, Ph.D, Oregon Health and

Science University)

A publication by LLS-funded researchers at the Knight Cancer Institute at Oregon Health and Science University (OHSU), and an accompanying editorial, were published this week in the New England Journal of Medicine describing exciting findings for patients with two rare forms of leukemia.

The authors of the study, “Oncogenic CSF3R Mutations in Chronic Neutrophilic Leukemia and Atypical CML” used genetic testing to identify a new target for therapy for patients with blood cancers called chronic neutrophilic leukemia (CNL) and atypical chronic myeloid leukemia (aCML). The researchers found mutations in a gene called colony stimulating factor 3 receptor (CSF3R) and learned that the abnormal CSF3Rs initiate a chain reaction with other genes(a pathway), subsequently driving cancer formation.

This discovery is promising for patients because both of these diseases are very rare, difficult to diagnose and extremely difficult to treat successfully. The prognosis for most of these patients is very poor. But, this study shows that some of these patients may be able to be treated effectively with existing FDA-approved drugs, because these drugs appear to inhibit critical molecules in that CSF3R pathway and cause the cancer cells to die.

While the patient population impacted by these findings is small, this study is another example of LLS stepping in to address a clear unmet medical need for patients in desperate needs of new options,” said LLS Senior Vice President of Research Richard C. Winneker.

In the bigger picture, the study is further evidence of the power of using technology to identify cancer-driving gene mutations that can be targeted either with already approved drugs or new compounds yet to be developed.

In his supporting editorial, Jerald Radich, M.D., of Fred Hutchinson Cancer Research Center, notes: “This study shows the potential power of studying a small problem very craftily and is an example of what genetically informed treatment may look like in the near future. This is how we will beat cancer, one gene, one disease at a time.”

The main authors of the study are Julie Maxson, Ph.D., and Jeffrey W. Tyner, Ph.D., both of whom are members of an LLS Specialized Center of Research program grant led by OHSU’s Brian Druker, M.D., also listed as a co-author on this study. LLS-grantee Michael Deininger, M.D. Ph.D, of University of Utah, also contributed to the study.

“What distinguished this research was our method for matching a voluminous amount of gene sequencing data with drug sensitivity data to quickly deduce which mutations were relevant for treatment so that we could make a difference for patients who don’t currently have good therapeutic options, “ Tyner said.

Milken Institute Global Conference 2013

communityreply@lls.org — Wed, 08 May 2013 20:18:26 GMT

I recently returned from a fascinating couple of days in California attending The Milken Institute Global Conference 2013, which convenes some of the world's most extraordinary people to explore solutions to today's most pressing challenges in business, health, government and education.

I participated in a wide variety of sessions over three days, with a staggering juxtaposition of participants – for example a session, Bioscience Discoveries That Will Blow Your Mind, featured a 16-year-old, Jack Andraka, who has come up with a 90% accurate diagnostic tool for pancreatic cancer; he sat alongside the 1975 Nobel Prize Winner in Physiology or Medicine, Dr. David Baltimore.

Other speakers throughout the three days included: NBA legend Magic Johnson, Former British Prime Minister Tony Blair, Former Vice President Al Gore, Mexican business magnate Carlos Slim, Senator Harry Reid (D-NV) and Rep. Eric Cantor, (-VA) .

The entire conference was fittingly closed by remarks from Microsoft’s Bill Gates.

I personally sat on two panels: Financing the Future of Bioscience and Pharma on Tuesday April 30; and Impatient Patients: How Disease Organizations are Accelerating Research on Wednesday May 1.

For the first panel, I was joined by representatives from National Institutes of Health, investment banking and venture capital, and the new arena of crowd-source funding.

We discussed why high risk long-term investments are needed to turn medical innovation into lifesaving therapies. I explained that because blood cancers are considered “orphan diseases,” it is often difficult for good science to get funded, and this is where LLS steps in.

I gave as an example, the recent news about advances made by research teams at University of Pennsylvania and Children’s Hospital of Philadelphia in treating leukemia patients through adoptive T-cell immunotherapy. LLS has been funding research in their labs for the better part of 15 years to tune of $16 million. And when you look back at how much they got from traditional research funding sources, it was less than $2 million. Without LLS support that work would likely have gone unfunded and taken far longer to achieve success.

In the second panel I was joined representatives from Prostate Cancer Foundation, Melanoma Research Alliance and Fighting Blindness. The panel was hosted by Margaret Anderson, executive director of FasterCures, who I’ve written about before.

We discussed ways that voluntary health agencies are working to accelerate cures. I spoke about two of the different pathways taken by our Therapy Acceleration Program.

One of our approaches is to harvest projects from our portfolio of academic grant projects and match them with resources to help them move through the steps of product development.The other path we take is partnering with small biotechnology companies that may have therapies with the potential to treat blood cancer patients, but are not being advanced because of economic challenges. Our goal is to help them get over critical hurdles and to a point where they can access capital markets or partner with a larger company to further development.

I described two success stories: one involves our work with an academic team that was repurposing an anti-fungal agent into a therapy for leukemia and how we matched them with a small company to move that project forward. The other: five of our TAP biotechnology company saw outside investments last year from big pharmaceutical companies. LLS had invested approximately $17 million in these partnerships, and third-party companies stepped in and invested $500 million. Ultimately, LLS leveraged our research dollars 30 times over.

I also emphasized the importance of our work in advocacy. If Medical breakthroughs can’t get FDA approval, or if patients can’t get access to life-saving therapies because of cost, we haven’t achieved our mission of cures and access for patients.

During lunch on the final day, this video, Celebrating the Impact of Science. includes quotes from Dr. Collins, Centers for Disease Control Director Tom Frieden, Michael J. Fox, Magic Johnson, FDA Commissioner Margaret Hamburg, Nobel Prize winners, and yours truly.

The whole three days provided a great opportunity to network with many esteemed colleagues from so many different disciplines, and to learn about the models of venture philanthropy that other organizations are developing. And I must say it was gratifying to hear thought leaders throughout the conference laud the work that LLS does.

At one point NIH Director Francis Collins noted: “LLS is doing great science. We are so proud of our NCATs (National Center for Advancing Translational Science) partnership with you,” and I think Margaret Anderson put it best when she said: “LLS has been transforming the blood cancer space.”

Mourning the Loss of a Pioneer

communityreply@lls.org — Tue, 07 May 2013 01:00:32 GMT

We at The Leukemia & Lymphoma Society were saddened to learn of the passing on April 30, of Emil Frei III, M.D. Dr. Frei, who was 89, was a pioneer in the treatment of cancer, being among the first to demonstrate that multi-drug chemotherapy could be effective in treating cancer.

In the mid-1950s, Dr. Frei, along with Dr. Emil J. Freireich, a colleague at the National Cancer Institute, and an early advisor to LLS, and others, began testing the use of combination therapy – using multiple drugs at once – to treat children with leukemia, with each drug attacking a different molecular mutation.

When Dr. Frei and Dr. Freireich began their work, the five-year survival rate for acute lymphoblastic leukemia (ALL), the most common cancer to afflict children, was 3%. By 1965, after a decade of clinical trials, their approach, which involved combining as many as four drugs, had increased the survival rate to about 40 percent five years after treatment. Today ALL has a five-year survival rate of approximately 90 percent.

A clinician, researcher and administrator, Dr. Frei held senior leadership positions at three prominent cancer centers: the National Cancer Institute, part of the National Institutes of Health; the M. D. Anderson Cancer Center in Houston; and the Dana-Farber Cancer Institute in Boston.

Dr. Frei left an indelible impact on the treatment of blood cancers, and indeed, all cancers, with combination chemotherapy now a standard and life-saving treatment for a wide range of cancers.

Oral Parity Bill Passes Florida Legislator and Awaits Governor’s Signature

communityreply@lls.org — Mon, 06 May 2013 19:18:30 GMT

The passage late on Friday by the Florida State Legislature of a bill that equalizes cost-sharing for patients who take their cancer medications orally with those who are treated in a clinical setting, is a big win for these patients. The next step for the bill (HB 1159) is for Governor Rick Scott to sign it.

This bill eliminates the discrimination experienced by many patients who face exorbitant out of pocket costs in their health care plans simply because they rely on oral therapies rather than getting their chemotherapy intravenously. LLS joined forces with other patient advocacy organizations as part of the Coalition for Access to Cancer Care to push for this bill’s passage.

“Friday’s vote will be a life-changer for many patients in Florida, me included,” said Luke Webb, a survivor of chronic myeloid leukemia (CML), and an LLS volunteer who relies on Sprycel® a costly oral medication that keeps his blood cancer at bay.

“The Leukemia & Lymphoma Society is pleased to see Florida join 23 other states and Washington, D.C. in protecting cancer patients who rely upon these targeted therapies,” said Lisa Nelson, LLS senior director, state government affairs.

Photo, below, Luke Webb, LLS patient volunteer

WE HAVE A WINNER!

communityreply@lls.org — Thu, 02 May 2013 20:58:44 GMT

Congratulations to Carly Jarvis, who is the winner of our 2013 Light The Night T-shirt contest.

Her design was selected from among submissions by 31 participants and will now become the official T-shirt of the 2013 Light The Night Walk. Every walker nationwide who raises at least $100 will receive the T-shirt.

Carly, who is a volunteer with LLS’s Arizona Chapter, was inspired by her aunt, Karen “Lola” Renne, who recently died after a battle with myeloma. Karen had a strong connection to LLS’s Orange County Inland Empire Chapter, and was a top Light The Night Walk fundraiser.

“I wanted to be able to create a T-shirt that was 100 percent inspired by my aunt,” Carly said. “It was important to me because these last five years Karen was so involved with LLS. She had big team that went to Light The Night every year, and this will be the first time she won’t be there, so my whole family decided they wanted to walk and pay tribute to her, and having the T-shirt in her honor will be a great opportunity to have her at every Light The Night Walk in spirit. “

Carly added that Karen was a big quilter so she wanted her design to resemble a patchwork quilt.

And Carly is not just a Light The Night Walk participant; she also trains and participates in Team In Training and is currently preparing to run the half marathon at the Rock ‘n’ Roll San Diego Marathon on June 2.

The T-shirt contest took place during the months of March and April and Carly was announced the winner on May 1. The submissions were judged on their concept, originality and how well they captured the spirit of Light The Night Walk.

“Even after her passing, Aunt Karen continues to inspire me and fuels my passion for the LLS,” Carly said. “She has passed the fundraising torch on to me and I could not be more honored to continue in her footsteps. This will be the first Light the Night she will not attend and it will be an honor to know that in some way she is there with all of us.”

Carly Jarvis, T-Shirt contest winner, and her Aunt Karen Renne

Why is Remembering to Take Some Pills so Hard?

communityreply@lls.org — Mon, 29 Apr 2013 20:52:37 GMT

Guest LLS Blogger Andra

I was diagnosed with CML (Philadelphia +) in September of 2011. It came as a huge shock, as I’ve really never been sick in my life, and I was only 26 years old. Once the dust settled and I realized I could live a full life with the help of oral medication, the shock dissolved into quiet confidence. I had cancer, but I was going to get better by taking two pills twice a day! This is going to be a piece of cake! I am going to be just fine! Exclamation points!

Medication adherence was a term I heard my doctor mention, but I didn’t think I would have a problem with it. They are just pills, right? Wrong. The medication I am on, nilotinib, or Tasigna®, must be taken when the stomach is completely empty; it may only be taken one hour before or two hours after eating. Being a stay at home mother to my then-17-month-old son did not lend itself to perfect medication adherence. Young children, as much as it pains most parents to admit, do not always do everything on a schedule. There were many mornings that I had to fly out of bed to pick up the baby who is hollering for breakfast and before I knew it I had a piece of toast hanging out of my mouth while I’m dodging yogurt catapults. There goes the morning dose; I just have to remember to take it in two hours. But then it’s time to go to the park for a playdate and to eat lunch, and Oh no, I just ate too much to take my pills AGAIN and now I have to push my dose back AGAIN. And on and on it goes.

I realized that I was missing more doses than I felt comfortable with, so I tried a medication reminder system called “Glowcap”. It is basically an alarm-like pill bottle cap (with a corresponding night light you can plug in anywhere in the house as a visual reminder) that you can program to go off at the time you need to take your medication. It was a great idea, but since my medication is more dependent on the contents of my stomach than the time of day, the alarm became more of a nuisance than a tool in my situation. I was getting frustrated. Why is remembering to take some pills so hard, especially when they are what is supposed to be making me better? I finally had to own up to the fact that some of the side effects of the drug (fatigue, bone and joint pain, nausea) were affecting me to the point that I didn’t WANT to take the pills. I didn’t want to constantly feel ill or be in pain that I didn’t think I would feel until I was much older. By talking with my doctor and getting the side effects under control, I found myself forgetting my doses less and less. Imagine that.

It was around this time that I was lucky enough to get a smartphone, which came equipped with very handy alarm and stopwatch features*. When I was finished eating dinner, I began to set the timer on my phone to ring in 2 hours with the message “TAKE YOUR PILLS CRAZY!” flashing across the screen. I asked my husband, who wakes up early for work, to wake me up also so I could take my morning dose and go back to sleep, so as to not have to worry about accepting the bites of food my son loved to offer me.

Even with timers and reminders, sticky notes or string tied on a finger, skipping doses is a reality for people on lifelong medications. Nobody is perfect, and nobody expects you to be. If you miss a dose, don’t beat yourself up. Take the next one, and the one after that. And on and on it goes.

*LLS offers My CML Tracker, an online tool that allows you to set up daily email and/or text medication reminders and helps you keep track of appointments, questions for your doctor, medications, side effects, test results and notes. My CML Tracker is available for PCs, smart phones and tablets.

CML blogs are funded by a grant from

If you have a story that you would like to share and post on our CML blog, please email cmlblog@lls.org with your name and a short description of your experience.

International Innovation: Spotlight on Collaborative Research

communityreply@lls.org — Mon, 29 Apr 2013 19:04:32 GMT

While The Leukemia & Lymphoma Society’s primary focus has been in the United States and Canada for the 64 years of our existence, we are becoming ever-increasingly more global. Approximately 15 percent of the research we currently fund is outside the U.S. and we are forging partnerships with patient advocacy organizations in the UK and Brazil and seeking others.

Thus, our presence this month in a European publication, International Innovation, is a wonderful way to tell our story to readers across the globe. International Innovation is a magazine published in the United Kingdom, with a focus on scientific research and technology innovation on both sides of the Atlantic.

LLS is prominently featured among the companies fostering collaborative health research in the magazine’s April 2013 issue.

The article allows us to share with a global audience LLS’s commitment to advancing breakthrough therapies and ensuring access to treatments for blood cancer patients.

In my interview with the magazine, I speak about how LLS funds basic, translational and clinical research, and supports the training of the next generation of first-rate cancer researchers through all of our academic grant programs. And I highlight how our Therapy Acceleration Program, through partnerships with the biotechnology and pharmaceutical industry, is helping to bridge the gap between academic discovery and drug development, and moving innovative biomedical discoveries more quickly from the laboratory into clinical trials and ultimately to patients.

I give as examples of academic success stores the significant role that LLS played in both the Gleevec® and T-cell immunotherapy breakthroughs - Gleevec being the most successful targeted cancer therapy discovery this century, and T-cell immunotherapy showing enormous promise for patients with leukemia and potentially many other types of cancers. For the TAP case study, I describe our partnership with Celator to advance a novel therapy for patients with acute myeloid leukemia.

Innovation knows no boundaries, and tackling the many health challenges we face requires cooperation from all corners of the world. I look forward to more opportunities to share LLS’s goals and successes with a wider audience in the future.

241 Blood Cancer Medicines in the Pipeline

communityreply@lls.org — Fri, 26 Apr 2013 15:37:00 GMT

The Pharmaceutical Research and Manufacturers of America (PhRMA), an organization representing America’s biopharmaceutical research companies, will be hosting a webcast on Monday April 29 at 1 p.m. to discuss its report: Medicines in Development for Leading Blood Cancers. The report details the 241 drugs currently in the development pipeline for patients with leukemia, lymphoma, myeloma and other blood cancers. All of these drugs are either in clinical trial or under FDA review and hold out hope for the more than 1 million North Americans living with some type of a blood cancer.

Richard C. Winneker, Ph.D, senior vice president of research for The Leukemia & Lymphoma Society (LLS), and Jessica Melore, a two-time lymphoma survivor, LLS patient volunteer and frequent LLS guest blogger, will both be panelists for this discussion about the promise of medicines in the pipeline, and LLS’s role in forging partnerships to advance medical innovation.

The panel will be moderated by Salvatore Alesci, M.D., Ph.D, PhRMA vice president, scientific and regulatory affairs, and will also include Joe Camardo, M.D., senior vice president, global medical affairs for Celgene Corporation.

You can read more about PhRMA’s report here and here.

And our partnership with PhRMA goes beyond drug discovery. A group of PhRMA colleagues has trained and raised funds to help beat cancer as members of LLS’s Team In Training (TNT), and will be participating in this Sunday’s Nike Women’s Half Marathon in Washington D.C. Josie Martin, PhRMA’s vice president of public affairs, is the team captain and for her, the cause is personal. Her close friend, her godson’s father, died of myeloma and she is running in his memory. You can read more about the team’s efforts here. LLS truly appreciate the support of these dedicated PhRMA employees!

LLS's Someday Is Today in The Journal News

communityreply@lls.org — Wed, 24 Apr 2013 19:19:35 GMT

The Leukemia & Lymphoma Society's Someday is Today branding platform made the news again today with coverage in today's issue of "The Journal News."

The article features an interview with LLS Chief Marketing Office Lisa Stockmon, who describes the campaign's goal to raise more awareness about LLS's impact on cancer research and therapy advances.

"Someday Is Today" is designed to highlight the many ways that LLS continues to change the landscape of cancer, and to broaden our base on donors. TV spots will continue to air in six major media markets: New York, Chicago, Los Angeles, San Francisco, Washington D.C. and Dallas, and nationally on cable television, and network morning shows. The print ad has appeared in a number of top-tier media outlets including The New York Times, and The New Yorker, and along with TV and print, the platform also features a mix of digital and outdoor advertising, such as at bus shelters and train stations.

Momentum Continues to Build for State Oral Parity Bills

communityreply@lls.org — Wed, 24 Apr 2013 18:52:14 GMT

North Carolina is the latest state considering a bill that would equalize cost sharing for both cancer patients who rely on oral therapies and patients who get their chemotherapy intravenously.

The measure was passed by the House Health Committee and a vote before the state’s full House of Representatives could take place some time this week.

LLS has been advocating for the bill in North Carolina, as well as in other states including Florida and California. Such laws are already on the books in 23 states plus Washington D.C.

The North Carolina bill received extensive coverage the state’s media outlets today, and included quotes from Lisa Nelson, LLS’s senior director of state government affairs, as well as Amelia Borelli, a leukemia survivor who has been speaking out on the issue on behalf of LLS and other patients in North Carolina.

In states where these laws do not exist, patients who get their chemotherapy intravenously typically pay a flat co-payment that covers the drug as well as the cost of administering it, and their annual out of pocket costs are capped. Meanwhile, patients who take oral forms of anti cancer medication pay a co-insurance, which is a percentage of the drug’s cost and can be upwards of 50% of very costly drugs.

Read some of today’s coverage here and here; we previously talked about the Florida bill in this post.

photo: left to right: LLS advocate Barb Volano, ; Loreal Massiah (LLS North Carolina Chapter patient services manager); Lisa Nelson, LLS senior director state government affairs; Amelia Borelli, leukemia survivor and LLS patient advocate.

Scientific American

communityreply@lls.org — Thu, 18 Apr 2013 18:22:41 GMT

Scientific American hosted a “salon” sponsored by Celgene on Tuesday April 16 at the John F. Kennedy Center for the Performing Arts in Washington D.C. to engage thought-leaders in an interactive discussion of what it will take to free the world from cancer in the future.

The exchange of ideas was fascinating. I was invited as a panelist representing patient advocacy, and the focus of my remarks was new models of collaboration and public/private partnerships working to advance new therapies for cancer patients with unmet medical need.

The program, which preceded the 4-day TEDMED 2013, was moderated by David Brancaccio, host and senior editor of American Public Media’s “Marketplace Tech” and former host of PBC TV series, “NOW.”

Other panelists were Bob Hariri, M.D., Ph.D., chief executive officer of Celgene Cellular Therapeutics; Tomas Philipson, Ph.D., the Daniel Levin Professor of Public Policy Studies in the Irving B. Harris Graduate School of Public Policy Studies at The University of Chicago; and Frank L. Douglas, M.D., Ph.D, partner, Pure Tech Ventures; founder, MIT Center for Biomedical Innovation; senior fellow, Ewing Marion Kauffman Foundation.

The audience of approximately 55 people, was comprised of distinguished luminaries from the media, professional medical societies, patient advocacy organizations, biopharma trade groups, think tanks, government agencies and academia. The goal of the salon was to highlight the value of medical innovation, address the opportunities and challenges we face in taking on cancer, and how all of the stakeholders can work together in our quest to make cancer a story of the past.

Bob Hariri shared the industry perspective on the value of biomedical innovation, and Tomas Philipson and Frank Douglas talked, respectively, about the policy environment and the economic engines of cancer treatment innovation.

In my remarks I said that the focus of cancer treatment needs to be based on the driver mutations behind the cancer, not the tissue of origin. Imagine stepping forward to a time where patients are recruited for a clinical trial on a basis of the driver mutation that they have, and not on the basis of where their cancer is. It’s a different way of thinking, and it’s where science and medicine really need to go. We need to have a robust discussion with the FDA about how we can advance trials for cancer treatments that will recruit patients on the basis of the genetic defect involved rather than the tissue of origin.

I further made that point that, as much as we drive new therapies forward through the regulatory approval process, it is essential that patients have access to quality, affordable and coordinated care. So LLS is driving research and bringing together the players in the innovation ecosystem – including academic science, pharmaceutical and biotechnology industry, regulators, and third-party payers.

The salon was a timely and provocative lead-in to TEDMED 2013, an annual 4-day event bringing together leaders and innovators from many different disciplines focused on improving the delivery of health and medicine in the future.

Photo: LLS Chief Mission Officer Louis J. DeGennaro, second from left, panelist at Scientific American salon on scientific innovation.

Film 'Ways to Live Forever' to Premiere in U.S. This Summer

communityreply@lls.org — Wed, 17 Apr 2013 14:29:02 GMT

Excitement is building for the U.S. premiere of the film “Ways to Live Forever” a moving story of a 12-year-old boy, Sam, battling leukemia, and the ways that he and his friend, Felix, also a cancer patients, try to cope with their devastating diagnoses.

The film will begin showing in cities around the U.S. beginning on July 19. Check back later to learn more about screenings in your area. LLS is partnering with World Wide Motion Pictures Corporation to promote the film, and a portion of proceeds will benefit LLS and other cancer-related organizations. While tackling a difficult subject, the film is also filled with moments of humor.

"Ultimately, the message we hope to share is that while approximately 90 percent of children under the age of 15 survive acute lymphocytic leukemia thanks in part to advances supported by LLS, it is also the fact that, sadly, 1 in 10 children do not survive,” said LLS Chief Mission Officer Louis J. DeGennaro, Ph.D. "And many of those that do survive suffer long-term effects from today's toxic therapies. So we need to continue to fund research until every child can live a long and healthy life.

In the meantime, British teen star Robbie Kay has been doing his part to help LLS support those affected by blood cancers. Robbie has been helping out at the LLS’s Texas Gulf Coast chapter in Houston in recent months. His father, Ivan Kay, is training as a member of LLS’s Team In Training program to participate in the 22nd Annual America’s Most Beautiful Bike Ride, a 100-mile cycling ride around Lake Tahoe, CA, on Sunday, June 2. Additionally, Robbie organized and hosted a touch rugby tournament at his Houston-area school last month and raised more than $1,100 which was donated to LLS. His efforts involved captaining and training his own school’s team, communicating with other teams to encourage their participation, arranging a barbecue and snack shack, and scheduling the day's activities. Gratified by the experience, Robbie says he is looking forward to finding additional opportunities to volunteer with LLS. Robbie talks about the film here.

View the trailer of the movie; like them on Facebook and follow them on Twitter.

Photo: Actor Robbie Kay Helps out with LLS