The real challenge for ALS: It is more than how much…

It is wonderful that the ALS foundation has seen a huge financial windfall from its creative ice bucket challenge fundraising stunt. All terminal disease is terrible but ALS is a truly horrible disease. And there is, at the moment, little hope for effective therapies. But the ice bucket challenge has, for the moment, changed the focus of the questioning from – how to raise more funds? to what to do with the funds? And as difficult as fundraising is – using privately raised funds to spur new research for terrible diseases is, in my view, one of the most difficult challenges one can imagine. There will be no shortage of experts ready and willing to tell the charities where to put their funds.
Much of it will boil down to funding more of what is already being done.
ALS has always struck me as one of those diseases where we might have got ourselves into a local minima with respect to ideas. it seems like we are missing something – that to step back and really look with fresh ideas at the human disease, unbound from all our preconceived notions and scientific biases is needed. I know this seems wasteful to many in the scientific community who feel that we’ve got the right nail – what is needed is a bigger hammer.
Maybe. But I think this is where the private dollars could really make a difference. But it has to be an authentic conversation. And some of the voices really have to be new. And there has to be nothing too sacred to at least be considered for throwing under the bus. The ALS folks have shown they are willing to be really gutsy when it comes to raising funds. Now let us hope they will be equally gutsy when it comes time to spend.

Attending to the Worried Well

The news coming from an international conference on Alzheimer’s Disease ongoing in Copenhagen indicates that the research focus is pivoting towards the push for early diagnostics.    A number of stories have come out about non-invasive eye exams and a possible blood test that could indicate problems long before a person begins to show serious cognitive decline.   Several studies are gearing up to look at preventative measures or ways to slow the progression of the disease (see http://online.wsj.com/articles/alzheimers-disease-fight-focuses-on-preventive-treatment-1405396803)

Remarkably – some of the positive preventative measures are our old standbys – diet and exercise.  Some others are likewise treatments designed to help maintain overall health (controlling hypertension, cholesterol, and diabetes).     But one can not help but wonder — is that about a particular disease with a very particular pathology – or is this more about staving off the  cognitive decline of aging and ill-health?

Don’t get me wrong – I am all for studies that will help us age better, remain active, and delay and/or prevent cognitive decline.

But I think while this kind of effort is pursued the advocates and funders  can not let science and medicine be diverted from the effort to treat a serious disease process that is devastating to individuals, families, and society.

I have written about this issue several times — there are these 3 factors that tend to creep in and divert us from hard and real problems:

1. the Lure of Beauty – this is what we love about studying  aspects of disease in place of disease.    We pull on one single thread – ignoring the completeness of the fabric.    We can do elegant, controlled, replicable, publishable science.

2. Models of disease rather than disease – similar in some ways to 1.   We create cartoons of disease and then make them the focus of all of the effort – forgetting somewhere along the way that models are often simplistic, artificial, and NOT the disease.

3. Shifting focus from truly ill to worried well.   Pre-cancer, pre-diabetes, pre-alzheimers.   Of course prevention is always better than trying to cure endstage disease.    But still, there is an obligation to try to relieve the suffering of people who have devastating illnesses.

Advocates should keep the pressure on.

 

The Tedification of Science Communication

Spring is here and I have been trying to channel the  new energy of the longer days, warmer air, and bursting life.   Still, I can help feeling some nagging curmudgeonly negativity whenever someone sends me a link to a Ted talk.   I think these glib, over practiced, designed to wow talks do very little to transmit knowledge.    Under the guise of transmitting information the talks are really intended to transmit the “coolness” of science – and of course make rock-stars out of geeks.   Only kidding about that last part — I have never bought into the stereotype that scientists are geeks completely lacking in communicative ability.   I have friends and colleagues who are remarkably good communicators.   Of course I know lots of scientists who are NOT good communicators but I think this fact is also reflective of any population of individuals who work in specialized areas where a jargon develops.

But TED talks turn me off — they have become so stylized and lacking in any true human authenticity as to almost seem like parodies of themselves.    But the really serious reason I dislike them is because the TED style is beginning to permeate throughout ALL scientific communication.    Every talk, even if just to your lab group or your department, has to be a slam-wham – banished are the pesky details (like methods) or the way data is analyzed – heck, gone is the data!    Let’s just get perform a masterly summary of the bottom line of my interpretations, why the results are so incredibly cool, why the whole world needs to act on what I have done –  let the hype flow unchecked.     It is unfortunate that a good idea can so quickly become corrupted because our need to entertain is so much more powerful than merely sharing what in many cases is the mundane, daily effort of seriously trying to understand something.

All I want for Christmas…

The philanthropy silly season is upon us.   You know what I mean — the endless annual appeals, the bell ringers, the add a dollar to your grocery bill, the buy a paper candy cane to show your support for X, Y and Z.   Each year, deciding how to give charitably becomes more difficult.   How do you decide among the ongoing needs (feeding the hungry) with the immediate needs of the victims of catastrophes – be they natural or man-made.    Last year it was the devastation of SuperStorm Sandy.   This year it is the typhoons and the tornadoes.   Our tendency is, of course, to give a dollar here, a dollar there, a donation here, a check there, a text for $10 dollars here, until we realize that while these small donations can add up — it is hard to see how this kind of giving helps in the long-term to strengthen our likelihood of withstanding devastating events.   Are we helping institutions, organizations, and people begin to think about how we cope with adversity regardless of its source?      JD Rockefeller – a pioneer of strategic giving  invested in understanding the root causes (so not just feeding the hungry but understanding why there is hunger and how to eradicate it).    So perhaps we need to think about how we support the organizations that do more than respond to tragic events but work to alleviate tragic events.   Of course Rockefeller also wrote that organized strategic philanthropic giving did not absolve one of personal charitable giving.   We still must respond to the crises.   But we should also dig deep into our pockets and invest in solutions.

Is it time for everything to get smaller?

I wonder if all of our institutions are becoming not just too big to fail but too big to function?    Universities can’t just provide an education – they have to provide “an experience.”  The library can’t just loan books – it has to offer a carnival of entertainment.    The zoo can’t just showcase interesting animals – it has to offer a hotel and a convention center.   The radio-talk show has to have a blog, and sponsor events, a music play list, and … who knows, probably do your kids birthday party.   Nothing can be a small itself.     Everything has to be blown up like a giant hot-air balloon. Well, hot air balloons take a lot of energy.    To paraphrase a fantastic saying I just heard from a very wise man — if you actually don’t want to do anything, do everything badly.

Seeking truth

I suppose there has always been a bit of a grey about the way the academic science community talks to “the public” – broadly defined as everyone who does not have a tenured position in a scientific department or a full-time position at a research institute.    Recently I have the feeling that the greyness is fading to something a bit beyond the pale.    I have been reading that scientists want to flee the US because of the sequester (based on self report in a survey) with little or no hard evidence supplied.    (ANOTHER TOPIC NOT TO BE DISCUSSED HERE IS THAT WE ARE MISSING CURES FOR DISEASE BECAUSE OF THE SEQUESTER AND LOSING A GENERATION OF SCIENTISTS — NOT EVIDENCED BY MY OWN EXPERIENCE OR THE NUMBER OF POSTDOCS I SEE IN BIOMEDICAL RESEARCH LABS)  Scientists have often moved across national borders for any number of reasons.    And besides, who cares?   If a US trained scientist wants to go work in a research laboratory in Singapore or in China — isn’t this a good thing?    Knowledge is not a zero-sum nationalistic game.   Knowledge flows fairly easily across borders.   All I want to know is – are they resigning from their US position or double dipping?    Hopefully resigning so they are freeing up positions for others.  I think we can all name US scientists who have accepted positions in international centers in addition to their US positions.   I am reading that young academic scientists can not secure good jobs because old academic scientists can’t retire because of financial hardships.    Seriously?   Spend some time with an aging academic at prestigious scientific institutions like Yale, Harvard, MIT, Princeton or one of the UC schools and tell me if you think they have it rough.   Ask any senior scientist for their travel schedule for the year and think about how much more money there might be for research if everyone stayed home 1/2 the time.    Look – I am not saying that highly educated and valuable scientists do not deserve to be well-compensated and to enjoy one of the wonderful benefits of an academic life – travel to meet and exchange ideas with colleagues in pleasant and stimulating settings.   What I am saying is that an academic scientific life is a good life, a privileged life supported to a large degree by public funds.  The public should be told the truth.

“You’re Words and Your Life Have to Match”

I heard the title quote while listening to the ESPN radioshow Mike & Mike a few mornings ago.    The commentor, a coach, was speaking in the context of the “Johnny Football” story about the Heisman trophy winning quarterback from Texas A&M.    But he was making a much larger point about the responsibility of adults (like coaches) to help young athletes develop lives of integrity.   To me – it was perhaps the simplest statement I have every heard summarizing a deep philosophical approach to life.   How much better would the current state of so many of the institutions around us, seemingly bogging down in corruption, if we all lived this way — matching our lives to our words.

In the philanthropy of science it would mean funding what you say you are funding.   If you say you are looking to fund ideas early in their inception, fund ideas early in their inception.    If you say you want to provide opportunities for young scholars to pursue alternative hypothesis, don’t fund the anointed heir of the status quo.

For those seeking funding it would mean not saying you are curing disease X when you are can barely define disease X.     It would mean not saying “no one is doing (or funding) Y when there are actually lots of researchers studying Y with lots of grant dollars.

For universities it would mean that scholarship and knowledge generation and transmission are job 1 – not selling sushi and sweatshirts or providing an “experience.”

If each of us – no matter our role – tried really hard to make our words match our lives we might make progress against some really tough problems.

keeping it honest

I am off 2 minds about what it means to keep researchers honest when it comes to disease-related research. On the one hand, I do think advocates should hold researchers’ feet to the fire.    If you say you are trying to cure disease X then your work should be clearly connected to curing disease X.   I have a personal rule of thumb I use for calculating “connected” — you get 2 or 3 “ifs” and 1 or 2 “buts.”    As soon as I hear a string of “if, if, if, but, if, if, but, if then maybe, but…” I know this is not feet to the fire applied research. So what’s on my other hand?   I am increasingly of the mind that demanding basic researchers to link their work to diseases (courtesy of the NIH culture) or broader impacts (thanks to NSF) has done much more harm than good. It has distorted what gets done and why.   It has created an illusion of knowledge where there is really a gaping hole.   it has squandered funds and the hard work of many smart people with good intentions. My remedy: let’s keep it honest.    If you are dedicated to helping develop effective treatments for some disease – do it and do it well.    If you really want to pursue interesting biology just because – do it and do it well.   But please, lets stop doing uninteresting biology that is unlikely to be of any use to anyone.

Philanthropy – it’s all the rage

Recently I have noticed that the glitterati, or those famous for being famous, are tacking on an additional title to “celebrity”  - philanthropist.    One can visualize the grave-spinning of Rockefeller and Carnegie, two individuals whose writings have contributed much to the 100 year old philosophy of strategic philanthropy.    I imagine that in some circles going to charity balls and launching twitter campaigns for the trendy cause of the moment counts as philanthropy.   But in reality, as anyone who has worked or volunteered in philanthropic giving – doing it well (read thoughtfully and impactfully) is not easy.    Too often, our intuitions of what is likely to be effective against tough societal problems are, well, just plain wrong.    Unintended consequences abound.   Short term attention can often compound rather than alleviate misery.   Mismatching problems and resources can result in the double whammy of barely moving the needle on intractable (or misguided) issues while diverting resources from the tractable ones.     I have no doubt that glib-anthropy intends to do good.  But we all know the cliche about what road is paved by good intentions.  Time to do better.

Thanks to a reader for directing me to a longer and more authoratative blog on this topic. It can be found here:

7 worst international aid ideas” http://matadornetwork.com/change/7-worst-international-aid-ideas/

 

The risks of breeding cynicism

As a scientist whose professional life is dedicated to funding and advancing science – particularly biomedical science serving society- I have been appalled at the rhetoric in play regarding the supposed “lack” of funding for science.    To say that flat budgets or slight budget cuts is decimating knowledge generation in the US is completely ridiculous.     For prominent researchers to claim that every experiment of every stripe is curing alzheimer’s or autism should cause embarrassment.   To say the cuts are causing the US to  “lose a whole generation of scientists” is, quite simply, untrue.    I have seen no shortage of bright, young scientists entering PhD programs.    The overproduction of biomedical scientists has been true for at least several decades so blame the lack of career paths on the sequester is pure PR.      Academic scientists know the truth.  Much of basic science research is unlikely to move the needle on treating devastating, complex diseases sny time soon.    For example, recent studies have shown that many neuroscience findings are unreplicable and non-translatable.   In part this is contributing to the slow development of new treatments for neurological disease.   There is danger with tying basic, discovery science to treatments or economic development, or any or the other rationalizations I hear.   Searching for knowledge is a core human trait.   Seeking the truth about our natural world is why most of us are drawn to science.   To reduce truth-telling to “say anything” breeds cynicism.    My fear — it is the cynical twisting of reality that will lose us the best and the brightest.