Thursday, May 6, 2010

Update on all of our Skin of Steel Activities

Hi Folks,
It has been whirlwind recently in terms of our launch of Skin of Steel, collaborative work with Rush, Christopher's admittance into all 5 of his colleges, Sachi taking a lead role on the SOS Board, Mas keeping us all a float financially, Grandma Joan flying in at the last minute so as not to miss the Brainstorm...and me continuing with the chemo combo and braf inhibitor treatment.

SOS now has a professional identity courtesy of Kurt Meinecke and Barb Lynk of Group Chicago.  Be sure to check us out online at as well as on Facebook.  We have a logo suitable for multiple audiences.  We also have a fabulous new SOS Shade & Awareness Tent and a 16 foot wide double sided banner that is available for Health Fairs, Recreational Events, Corporate Wellness Programs, etc.,.

We held our first Brainstorm at Youth Services new facility hoping we could get 50 invitees to show up and 150 showed up.  We now have a database of 383 individuals and our website has over 1,000 hits.  Hard to believe we started this only 3 months ago.  

The Brainstorm generated incredible interest that we are corralling into feasible strategies for sun safety awareness, prevention training, early detection, comprehensive treatment, institutional coalitions, corporate relations, and government advocacy.  My hats off to Glenbrook South High School Prinicipal, Brian Wegley for taking the plunge and declaring academic year 2010-11 to be dedicated to sun safety.  13 GBS students led our Brainstorm breakout sessions, while another 6 started working on a baseline survey of student sun practices and use of tanning salons with our SOS Advisor and Northwestern Medical School Professor, June Robinson.  Interestingly, word got out very fast.  Within a week, seven area high schools inquired as to how they could get "sun safety training that would really speak to their high school students".

It is this latter comment that keeps me up at night thinking how to make sun safety as common place as putting on a seat belt or refraining from smoking.  The goal is clear but we haven't come up with the right message yet.  Some believe the only way is through fear...others disagree.  Clearly we need to try harder.  We are looking carefully at how to identify the right spokesperson.

Right on the heels of the Brainstorm, I took our first SOS Outreach Team of Karen Hirsch, Jodi Shannahan, Sharon Mann, Liz Garvey, Debbie Hepburn, and Marie Fischl, to the Los Angeles Free Clinic run by Remote Area Medical.  We provided outreach for 8,400 over 7 days at the LA Sports Arena. Our team was assisted by medical and undergrad students from UC Irvine's Spot a Spot program.  We referred over 500 patients for follow up with dermatologists.  While educating, we distributed 8,400 Aveeno sunscreen samples to construction workers, boom operators, poets, teachers, photographers, real estate agents, small business owners, young children, teens, and people of all colors.  Maria Shriver visited our SOS exhibit and we were invited to attend her upcoming Women's Conference. We were interviewed by a variety of outlets including AP International and the Japanese Business Journal "Frontline".  But mostly we were humbled by the patients' intelligence, humility, and willingness to learn.  The lack of both skin cancer outreach and skin clinics in California, the state with the highest melanoma death rates, suggests that other states are probably in a similar situation.  

Consequently, while we were out there, SOS started building a local consortium comprised of the LA County Supervisor Ridely-Thomas' Health Care Policy Coordinator, Dermatologists from USC, Cedars Sinai, UCLA, Kaiser, a Management Consultant affiliated with the Taproot organization, a Melanoma survivor and a possible corporate foundation devoted to safety clinics.  We believe that this was the intent of RAM in terms of the evolution of people like you and me identifying our own public solutions to health care rather than waiting.

Next week I turn my attention to consortium building on the homefront. Dr. Kaufman and I continue to speak out on the benefits of collaboration on a Chicago-wide basis.  It seems we now have interest from Northwestern, Univ of IL-Chicago, Loyola, and Lutheran General.  After attending the BIO Int'l Conference on Monday, at the bequest of SOS Advisor Ray Drymalksi, I have also initiated contact with eleven pharmaceutical, biomed foundation, and government entities that are interested in our efforts.  What was perhaps most interesting observation from the conference, is the number of pharma subsidiaries coming out with Melanoma diagnostic tools.  Maybe the facts, that skin cancer is the fastest growing cancer and Melanoma is taking one life an hour, are now registering with the pharma market.

On a final note, it is with so much joy that I get to announce that our son Chris will be headed to Pitzer College next year in Claremont, CA.  Pitzer is part of the Claremont Consortium of 7 schools.  It is known for independently designed programs, social responsibility and global citizenship.  Chris will be able to take courses at Pomona, Claremont McKenna, Scripps, and Harvey Mudd.  His current major of Asian Studies and the Japanese Program is run out of Pomona, so he will spend a lot of time there.  Masuo, Sachi and I are proud of Chris' accomplishment thus far and are excited about what he contributes to the world in the future.

Skin of Steel's First Brainstorm on Skin Cancer

See our Story through Chicago Tribune

Monday, May 3, 2010

BIO Int'l Conf Key Monday Sessions on Clinical Trials & Research

2010 BIO Conference - Monday

I will attend this conference on Tuesday, May 3, 2010 in search of more strategic partners for Skin of Steel and its mission to provoke change in how individuals and institutions respond to Melanoma.
See the Conference's key Monday Sessions below.

2:30 PM - Making Clinical Trials Faster, Better, Cheaper, Stronger
If a patient were sitting in the morning session of the Translational Research Forum, they might wonder what all the discussion of funding and private/public partnerships and basic science vs. applied science meant for them. For someone with an untreatable disease, the primary goal is getting a new cure, as soon as possible. Unfortunately, the slow pace of the clinical trial process is only outdone by its expense - as much as $500-800 million to test each drug or treatment before it is officially approved and brought to market.
The afternoon session, “From Invention to Bedside,” examined different means of streamlining this process so that promising scientific innovations are brought to the patients that need them more quickly. The real, human stakes are high - Julian Solway, director of the University of Chicago Clinical and Translational Science Award, spoke about the elevated rates of infant mortality and chronic disease such as heart failure and diabetes in the South Side Chicago community the Medical Center serves. How can the discoveries of the University of Chicago laboratories be brought quickly and efficiently to the neighborhoods surrounding campus?
One answer came from the other side of town: Lewis Smith, associate vice president for research at Northwestern University, who spoke about removing inefficient processes from the many, many clerical and application steps involved in clinical trials. Another option was suggested by Margaret Anderson, executive director of FasterCures, a non-profit organization that helps facilitate what she called “venture philanthropy.” Modeled by disease-specific advocacy groups such as the Cystic Fibrosis Foundation or the Michael J. Fox Foundation for Parkinson’s Research, the philosophy calls for a different attitude about investigating potential cures, one that prioritizes the patient.
“The bottom line is curing disease and producing treatments,” Anderson said. “Traditional measures [such as publications and shareholder value] are not what they care about.”
Anderson said these foundations are learning that the challenges faced in getting new treatments to market are often not disease-specific, but system-wide. Through collaborations like TRAIN, the groups are looking for new ways to motivate scientists and regulators to move more efficiently in clinical research and approval, in order to receive grants from the millions of dollars the groups have raised through events such as charity walks.
“Every dollar they are putting out is a dollar they had to raise,” Anderson said. “When you are walking for every dollar, you’re going to care deeply about where every dollar gets spent.”
12:30 PM - Speaking Different Languages: Academic/Industry Partnerships for Better Drugs and Treatments
(RM) While Rep. Dan Lipinski’s talk at the Translational Research Forum spoke of boom times for research funding, Stephen Kent, a professor of Biochemistry and Molecular Biology at the University of Chicago, added a healthy dose of skepticism to the proceedings in the day’s first panel. Kent pointed out that roughly 15 percent of the U.S. GDP is spent on health care, amounting to trillions of dollars, making the $32 billion wielded by the NIH appear to be the proverbial drop in a bucket.
“I think the amount of research investment is actually way too small,” Kent said. “We’re under-investing all over the place.”
Kent’s comments came as part of a panel called “From Science to Invention,” featuring speakers from the University of Illinois-Chicago, the Illinois Institute of Technology, and the pharmaceutical company Pfizer. Much of the discussion hinged on how scientists can turn a promising discovery in the lab into a patentable invention that can be brought - and sold - to the general public. In times such as these, where private biotech companies have decreased their research spending, facilitating science’s jump from campus to clinic is more important than ever.
Everyone agreed that an obvious solution was more private/public partnerships between pharmaceutical companies and research institutions. But proposing such a collaboration is one thing, and executing it is another. Kent pointed to the importance of a free exchange of information in developing new drugs; an openness that is often walled off by patents and trade secrets of private companies. Private funding for research taking place at academic centers exists, but has often run into ethical and administrative barriers. Meanwhile, an increased focus on directed research that focuses on one specific disease or problem has hurt funding for basic science - less immediately applicable research that often leads to unexpected breakthroughs. Finally, scientists must learn to better explain realistic goals to the public, said David McCormick, director of the IIT Research Institute, citing the field’s tendency to “overpromise and undercommunicate.”
11:30 AM - Report: Biotech Thrived as Economy Wobbled
(KM) The big announcement of the BIO convention’s first morning was the release of the Battelle Report, a snapshot of the state of the biotechnology industry. The report highlighted growth in the industry, reporting that 19,000 jobs were added between 2007 and 2008 despite the world’s financial struggles of the past few years.
Matt Summy, president of the Illinois Science and Technology Coalition, spoke to the benefits of the Battelle Report for use as a resource to their own organizations.  Summy works in conjunction with Illinois’ state government and economic development to move state initiatives forward, and he pointed out some of the highlights of the report relevant to his efforts.  For example, the data show that there is strong leadership in both large metropolitan areas in the Midwest (e.g., Chicago and Minneapolis), and in smaller areas as well (e.g., Decatur, IL and Cleveland, TN).  The data also offered opportunites for convergence, such as using the supercomputing capabilities of the University of Illinois to move genomic research forward.  Finally, the data showed that the midwest has opportunities for investment, for a supportive environment for entrepreneurs, and for high levels of innovation.
Vicki Loise heads the Association for University Technology Managers (AUTM), whose mission is to disseminate information for the public good.  One of the main vehicles for doing this is by patenting, which Vicki stated was different from, but just as important as scientific publications.  The data from the Battelle report is important for AUTM in that it helped to show the steady increases in new companies formed from university research.
Finally, Mitch Horowitz, who is the VP of the Battelle Technology Practice, spoke about the data collected in the report.  Battelle primary used figures through 2008 to track trends in bioscience employment, assess the financial performance of the bioscience sector, examine state-level indicators of the recent performance of the bioscience sector, and describe trends in state policies and programs.  The report first defined the bioscience sector as consisting mainly of 1) agricultural, feedstock and chemical 2) drugs and pharmaceutical 3) medical devices and equipment and 4) research, testing, and medical laboratories.  Some of the reports key findings were:
- Bioscience employment growth, led by research, testing, and medical labs, outpaced national employment growth from 2001 - 2008.
- All sectors, except drugs and pharma grew between 2007 - 2008
- The total employment impact of the bioscience sector led to 8 million jobs
- The bioscience sector continues to be a source of high-wage jobs
- Bioscience employment is widely distributed with 39 states having a specialiation in at least one bioscience sector
- States continue to invest in bioscience development, despite state fiscal challenges
- Based on an analysis of 649 biosci companies (2009), each of the 4 sectors were profitable
- One key warning sign of decline was that venture capital to the bioscience companies fell 36.7% between 2008
Although Mitch emphasized the positive trends in the industry, he cautioned that the continued growth is not guaranteed, mostly because of challenges at the state level, at the level of NIH funding, with the amount of venture capital available, and with the quality of science and math education at the K-12 levels.  However, he concluded that state and national policymakers have the ability to ensure that these challenges are addressed in order to allow the US to continue to be a world leader in biosciences.
10:00 AM - Making the Case for Research Funding
(RM) The slogan of the BIO convention - “Heal, Fuel, Feed the World” - describes the major global problems that biotechnology hopes to solve. But in the near term, a place where biotechnology can have a practical effect is on a less romantic, but equally concerning problem: jobs. With politicians promising to place job creation at the top of their to-do list in the coming months, it’s important to remember that a powerful indirect stimulus for lowering unemployment is the funding of research institutions such as the National Institutes of Health and the National Science Foundation.
Those organizations received a huge boost from the American Recovery and Reinvestment Act, otherwise known as the stimulus bill, in 2009. But U.S. Rep. Dan Lipinski, in his remarks to kick off the Translational Research Forum Monday, emphasized that Washington remains committed to increasing those funds and investing in science as a way to create new industries and jobs. With the NSF Reauthorization Bill he has drafted, Lipinski - who himself once received an NSF grant as a chemical engineering student - said he hopes to increase funding for the agency to $11 billion by 2015, while the Obama administration has pledged to double the NIH budget in a similar timeframe.
“There’s no question that this administration and Congress have stepped forward and shown real commitment to science and technology,” Lipinski said.
But scientists and research institutions can’t waste time celebrating these spikes of funding after years of flat budgets, Lipinski said. The case must be made to the public that scientific funding is essential for new discoveries that bolster the American economy and improve quality of life, he said. Improvements in STEM education - science, technology, engineering, and mathematics - must be made so that the U.S. can remain competitive with new research rivals such as China. And “research clusters,” such as the one made up of the universities and national laboratories in the Chicago area, must be nurtured and encouraged by federal funding.
“There’s no better place for scientific and medical frontiers to interact with biotechnology,” Lipinski said. “When you have talent in close proximity, that creates jobs.”