Understanding SENS Foundation: mission, message and more.

Posted by Sarah Marr on October 27, 2010 | Founders

Over the last few days we’ve been working to change some of the content of our website, and this seems like a good time to contextualize those changes in a broader discussion of SENS Foundation: who we are, what we want to achieve, why we want to achieve it, and some things we need to do in order to get there. I’ll also address some of the misconceptions about us which I think exist.

This post is an extended version of a talk I gave to a recent meet-up of Foundation supporters in Los Angeles. In some places it assumes a small degree of familiarity with the Foundation and its work, but I’ve tried to link where appropriate, in lieu of footnotes.

So, let’s start with something obvious, but worth stating: SENS Foundation is a biomedical charity.

In this respect we are no different from other organizations working to cure specific diseases such as cancer, Parkinson’s, Alzheimer’s, or atherosclerosis. You can see this on the website, perhaps most clearly when we say: The Foundation catalyses progress toward a comprehensive panel of rejuvenation biotechnologies through its growing global networks and collaborations, and through key research projects, executed in its own Research Center and numerous affiliated universities, research organizations and other centres of excellence. Put simply, we want to keep people healthy and we do that by investing in research and in the other activities necessary to increase the pace and reach of that research.

There are ways, however, in which we are different from those other organizations, and those differences are very important. They are the reason we exist. They set us apart. They ensure that our donors and other supporters can have confidence in the fact that they are helping to bring about an evolution of medicine. Understanding our unique position starts with the Foundation’s mission statement:

SENS Foundation works to develop, promote and ensure widespread access to rejuvenation biotechnologies which comprehensively address the disabilities and diseases of aging.

 

Understanding the mission statement.

Every word in that statement is there for a reason (beyond merely making it a grammatically correct sentence), and every word which you might expect to be there, but isn’t, has been deliberately omitted.

The first thing needed is an explanation of the term rejuvenation biotechnologies. Rejuvenation biotechnologies are the application of regenerative medicine – defined to include the repair of living cells and extracellular material in situ – to the diseases and disabilities of aging. If you don’t have any familiarity with regenerative medicine, or even if you do, then you can think of rejuvenation biotechnologies as ‘damage repair’: not fixing metabolism (the processes that keep you alive) or pathology (what happens when you get sick and symptoms show up), but intervening between those two extremes: removing the damage which metabolism causes, before it becomes problematic and leads to pathology.

The ‘car maintenance’ analogy can be helpful: you don’t try to stop your engine from sustaining any sort of wear-and-tear by pushing your car everywhere, and you don’t wait for it to grind to an ear-shredding halt on the motorway/freeway; but you do carry out periodic maintenance to undo any damage it has sustained and to keep it running smoothly. (With apologies to those who get a kick out of pushing their cars around or, as I have on at least one occasion, allow their engines to grind to a halt.)

This is the basis of our core message: SENS Foundation works to advance research on rejuvenation biotechnologies. We exist because no-one else is working to deliver on the promise of rejuvenation biotechnologies, to steer academia and industry towards the adoption of a damage-repair paradigm which is currently neglected.

The mission statement also describes these rejuvenation biotechnologies as being applied to the disabilities and diseases of aging, not simply, aging. Our approach will create a comprehensive set of interventions (on which, more later), but each of the individual interventions in that set will address one or more specific diseases, and those interventions will develop over time, not all at once. It would be wrong, therefore, to frame our mission in a way which suggested the ‘all or nothing’ proposition implied by our using the word aging alone. Each individual success – each new application of rejuvenation biotechnologies – will solve very real medical problems, and it would be a travesty not to recognize that fact (whilst never losing sight of the comprehensive solution towards which we are working).

I already mentioned some of the ways in which we develop and promote rejuvenation biotechnologies. Our mission statement takes a longer-term view of our work, however, and recognizes the need to ensure widespread access to the interventions and treatments which stem from our work. There’s no place for us, as a non-profit organization, and as altruistic individuals, to develop solutions which are only available to the very wealthy or specific geographical areas. We’re not so naïve as to believe that the interventions which we create will be free from market forces. However, we have a responsibility, when the time comes, to do what we can to chaperone them past that stage and on to wider availability.

So, we have a core message based around the advancement of rejuvenation biotechnologies, and we, as an organization, hold a unique and necessary position in ensuring that advancement occurs. This raises some specific questions, the answers to which are critical to the success of the Foundation’s mission.

 

Why are we talking about rejuvenation biotechnologies and not SENS?

SENS Foundation was founded with a very clear commitment to ‘mainstreaming’ the ‘damage repair’ approach described by the SENS platform. The multi-billion dollar funding levels and other resource requirements for delivering on the promise of this approach will require the backing of the global scientific community, and their involvement in driving governmental funding and support. (That’s one of the reasons that the current funding we receive from our donors is so important: not just for the proof-of-concept research it covers, but also because that research will generate, in time, exponentially greater levels of investment and capacity.)

The SENS platform itself has always been flexible – capable of expanding to include other types of damage and repair strategies, if necessary – but we needed to be able to communicate that without having to explicitly state it, and we needed to develop language which clarified the relationship of our work to existing research, particularly in regenerative medicine. Rejuvenation biotechnologies meets those requirements, and is already simplifying and accelerating the conversations we are having with potential collaborators. Make no mistake, there is nothing disingenuous about this shift – we are describing the same platform, the same damage-repair paradigm, the same research priorities – but we are doing so in language which better facilitates communication and understanding within the scientific community. And whatever other successes we might achieve, without that communication and understanding we will fail in our mission.

 

Why are rejuvenation biotechnologies important? What do they deliver?

I have a typical ‘on the plane to California’ conversation with the person next to me. It runs:

Person on the next seat: What do you do?

Me: I work for a non-profit I co-founded, called SENS Foundation. We’re working on rejuvenation biotechnologies.

PotNS: What’s that? (Or, sometimes, How did you make your video screen come out of the arm rest?)

Me: Some series of sentences featuring the phrases “damage repair,” “not metabolism,” “not pathology,” “car engines”, “regenerative medicine,” etc.

PotNS: And you do that because…? (Or, sometimes, Cool. How does the seat go back?)

We have to be able to answer that last question in a comprehensive manner. (Not the one about the reclining seat, obviously.) The Foundation has a number of narratives around its work, which explain the benefits of rejuvenation biotechnologies. At the same time, we recognize that our supporters, and our staff, often have a specific, personal focus which brings them to the Foundation and our work.

So, what are the key Foundation narratives, the ‘we choose to do these things because’ statements? A (non-exhaustive) list:

  • maintaining health: rejuvenation biotechnologies maintain youthful vigour and health
  • extending healthy lifespan: rejuvenation biotechnologies provide a comprehensive solution, reducing the chance of dying from the diseases and disabilities of old age
  • curing specific diseases: rejuvenation biotechnologies address specific diseases such as atherosclerosis, macular degeneration and Alzheimer’s
  • defining a third way in medicine: rejuvenation biotechnologies provide health professionals with new intervention strategies for treating their patients
  • changing the biotech/pharma development paradigm: rejuvenation biotechnologies allow a move away from increasingly niche and expensive treatment development based on metabolic or pathologic interventions
  • delivering socio-economic benefits: rejuvenation biotechnologies keep people healthy, reducing social welfare costs and extending economically-productive lifespan

An interest in any one of these narratives is enough for someone to become involved with the Foundation to some degree. The adoption of any of these narratives as a personal reason for supporting the Foundation is as valid as any other, but if that chosen narrative is then the only one which other people get to hear, it will present a skewed picture of the Foundation. That will cost us supporters, reduce our impact and slow our progress. If the Foundation is to widen its support base – to reach all the individuals who can help us and who can benefit from our work – we need to ensure that we, and our supporters, are talking in broader terms than a single narrative.

 

But SENS Foundation is all about life extension, isn’t it?

Our Chief Science Officer, Aubrey de Grey, puts it this way in his current talks and interviews: We don’t do longevity. We do health.

Keeping people healthy has a logical corollary: they live longer. There’s nothing new about that idea and, generally, nothing particularly controversial about it. When I explain the relationship between the Foundation and life extension I tend to call on Monty Python (which I suspect says a lot about my upbringing).

Suppose that, for some unfathomable reason, everyone died a mysterious, Python-esque death at 130 years old, the victim of an errant giant foot from the skies. That wouldn’t decrease the value of what we do one iota. We are about keeping people healthy. Does that increase life expectancy? Sure it does. Does it increase it greatly? If our therapies are comprehensive enough – and we believe they are – then yes, yes it does. (See, I told you I’d get back to the comprehensively part of the mission statement.) But that's a side-benefit of what we do, and not our focus.

Put another way: our mission is to address the diseases and disabilities of aging, whether or not that increases lifespan. Still, we recognize that extending healthy life is, in reality, a side-benefit of our mission.

We are absolutely clear, as one would expect, that an extension of healthy lifespan is one consequence of our work. And, of course, it’s a subject which makes good copy and sells magazines, so it’s one of the most often reported aspects of our work. Which makes it all the more critical that the other aspects get ‘airtime’, to provide a balanced picture of the Foundation.

 

Why is all of this important to you, as a supporter?

In some ways the answer to this question depends on how you already see the Foundation: its mission, its wider role, its place in the world. The following paragraph contains a lot of statements which begin “You don’t want us to be…”. If you find yourself thinking, “I never did,” or “I don’t even know what that means,” then, please, skip ahead: that just means that all is right with the world (in this somewhat limited context).

The bottom line is that you (as a supporter) want us to succeed, and that means you want us to be a organization which does things, which nurtures rejuvenation biotechnology in its early stages, and then helps it to grow into a coordinated, global enterprise. For those reasons, there are some things you don’t want us to be. As an example (or two, or three), you don’t want us to be a ‘transhumanist’ organization: there’s no need for the distraction of couching what we do in terms other than curing disease and ending the suffering of humans. You don’t want us to be a ‘futurist’ organization: what we do is no more ‘futurist’ than any other medico-scientific research organization, and there’s no value in artificially separating ourselves from those organizations. You don’t want us to be seen as immortalists: immortality (in the sense sometimes associated with our work) is easily dismissed, both metaphorically and literally, often by an unseen bus, or - less frequently - falling piano.

The list of ‘things you don’t want us to be’ goes on, but what it comes down to is that you do want us to be what we were founded to be: a mature, mainstream, biomedical charity. Anything else would be setting ourselves up for failure.

 

So, my point would be…?

This is a clarion call, and a relatively impassioned one, asking you to help us as we grow and our message reaches an ever larger audience. Nothing here, or in the revised website, or in anything else we do, reduces the extent to which the work of the Foundation is related to any one of the narratives above (maintaining health, extending healthy lifespan, etc.). It isn’t about reprioritization, renunciation, or disenfranchisement. It is about recognizing the value of all our stakeholders, and of all the consequences of our activities. By doing so, we will widen our support base, further mainstream our scientific research, and deliver on the promise of rejuvenation biotechnologies. And, at the end of the day, delivering is what we, and our supporters, seek to achieve, whatever our personal reasons for getting behind the Foundation’s mission.

Please, continue to tell others about our work: encourage them to visit our website, to read our publications and, in turn, to talk to others about what we do. When you talk to them, tell them the whole story: help them to find their own personal narrative, their own reason for supporting us. Sometimes that will be your reason, sometimes not. But whatever the reason, their support will make our progress faster, and our mission ever more attainable, to the benefit of all.

When all is said and done, it’s about creating a world in which all people have the opportunity to experience life free from the diseases and disabilities of aging. And I hope that’s a narrative that everyone can embrace.

Sarah

(This post is also available on my personal web site.)