thestoryofmeaningfuluse

A Magazine Capturing the Story of Health- For People, Environment, Economy & Habitat

Archive for Health

Publisher’s Letter – Introducing TSOMU Fall Issue – 2011

Letter from the Publisher

Lavinia Weissman

Boulder, Co

@wecarehealth5959595959595959595959

Our next series of articles will focus on “accelerated change.”

9/11 – 10 years later – represents an unfortunate trend in human behavior that occurs immediately after a natural disaster or catastrophe of massive harm.

The 1st responders performed the heroic deed of rescue, recovering the dead and creating some order to the destruction.

But after this initial phase of recovery and response, one has to ask if any leader stepped up to observe, monitor and act on the outgrowth of harm to the people, economy, environment and habitat?  And why was there no response to accelerate the response to this growing harm?

What happened post 9/11?

The Bush Administration, the US EPA Director and Mayor Guiliani assured the public that New York City air quality was fine. We now know that is wrong.

Over the past 10 years, a growing evidence base of medical harm that includes a variety of cancers and pulmonary/lung related diseases and more.

Response to this growing medical evidence data base  has multiplied the frequency with which NY Firefighter and World Trade Center survivors are stricken with pulmonary and lung related disease or encounter cancer and die.

Tom Zeller, a Huffington Post reporter, on 9/9/2011 reported on how this struggle for help for these victims is just beginning to take form 10 years after the collapse of the World Trade Center.

Zeller interviewed John Feal, a retired Ground Zero disabled worker who sustained an injury at the site, offered his perspective post injury that took half his foot;

“I don’t need a doctor or a scientist or 12 years of college and a Ph.D and an MBA — no offense to them — but I don’t need anybody to tell me that 9/11 didn’t cause or did cause cancer,”

Feal’s own struggle to win compensation for his injury prompted him to establish the nonprofit FealGood Foundation to help 9/11 responders cope with the physical, mental and financial fallout of that day. He said he’s getting more and more requests for help from cancer sufferers.

How 9/11 prompted my thought leadership and journalism

After 9/11, I stopped watching mainstream news. I tired  from what I perceived to be unproductive forms of protest, denial and debate.

It was clear to me that the mainstream media audience needed a new form of journalism and post event response that was going to repair or prevent future harm from events like 9/11, Katrina, Haitian Earthquake, tsunamis, hurricane and earthquakes.

Like many other citizens, I concluded that events like these were accelerating because of the denial of the politicians, government officials and commercial business around the world.

The tangible evidence of this acceleration was evident to any American with the new-formed reality that 1 out of 2 Americans now live with a chronic illness sparked or complicated by environmental and chemical toxins.

Based on this observation, I shaped a question from which to grow my investigation and learning:

What does it mean to pay attention and stop denial?

I turned my attention more aggressively to identifying communities of people in business and the public sector that dared to form innovative responses to sustain a future for our children.

Many groups have formed with a mission to discover what it takes to turn the societal impacts of what we do when we go to work, reside in local communities and sustain the health of our family economically.

Each group is building a quality of life that assures us the best health possible, whether we are living, working or dying; and by joining with a learning community, over time each group creates its own “story of meaningful use.”

Sustaining TSOMU Proof of Concept

This past summer, drawing on dialogue with my personal advice network that includes Trina Hoefling  and Bernie Kelly, I developed a monetization model to sustain thestoryofmeaningfuluse.com and its companion page on Facebook.

The model as a business model moves beyond the concept of virtual collaboration to defining partnerships linked to the magazine for public and private educational communities that are shaping through dialogue, inquiry and stories of meaningful use, concrete stories of meaningful use.

What is unique about these communities is that they incubate ideas, build a deliberate and organic discovery process to shape activities of applied learning that impact the health of the environment, economy, people, and habitat

The editorial direction and format for these public and private communities will growing into a live educational journal. The community can report on their learning and the discovery of outcomes and metrics that have shaped out of hard work and investment with the intention for meaningful impact and response to harm from the perspective of the Earth Charter Precautionary Principle.

TSOMU public community access will offer current reports on how these learning communities take shape and archive these communities’ stories of meaningful use (applied learning).

The private communities integrate and contract with me and other associates in TSOMU’s professional community to capture the story of action research learning labs that are structured to accelerate applied learning through the building of trust. This happens in an incubated learning environment that invites accelerated learning through the use of investment and shared resources.

An Innovative Market Ready Publishing Format

For the past 3 years, I have carried out the hard work of proof of concept for this new monetization model for producing a web-based magazine on the web of sustainable value.

For each learning community that TSOMU serves, we will capture the story that brings a project to life through advocacy and inquiry. Trust building is basic to this concept of applied learning.

Over the next year, parallel to shaping the performance of this publishing venture, I will work with representation from all our stakeholders to set up and put to use a performance and accountability system to measure how this magazine contributes to sustainable value of all the communities we serve, public and private.

Our goal is to attract community participation (public and private) and design a form of communication and reporting that is not excessive or confusing to support our readers and clients to do the work that measures tangible impact and outcome.

Why is this of Value Now?

The Secretariat General of the United Nations on 14 July 2011 issued a report on the role and functioning of the UN Global compact.

This 10 year performance review found the membership of the UN Global Compact had failed to build the performance model that embedded sustainability through global companies beyond the walls of corporate headquarters into subsidiaries and the supply chain.

This review followed a report from George Kell, Executive Director of the UNGC, on the impact of UNGC’s 6,000 members over 130 countries.

This performance review of the UNGC’s work over the past 10 years parallel’s the lack of response to the growing harm that has taken form as a result of 9/11.

This assures the intelligence and heart of why the publication of thestoryofmeaningfuluse.com is so timely. The articles featured in this next cycle of publishing include contributions and editorial from

Jochen Kleef, Chairman EcoPoints Asia

Bernie Kelly, Principal, Intelog Health

I hope as our reader, that as you select and read articles that are relevant to you and you will join the dialogue for accelerated change and applied learning that this magazine serves.

Take a minute to add your thoughts  (comments)  to what you think of our agenda and help to build our community of accelerated change to embed sustainability.

Best,
Lavinia Weissman

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WEResearch Note – #pharma – Beyond Business as Usual!

A Research Summary

by Lavinia Weissman

Boston, MA

@wecarehealth52

(graphic: from Vertex Pharmaceuticals collection)

Sanofi Aventis announced the completion of its acquisition of Genzyme, April ll, 2011.  Now is it business  as usual for this progressive global pharmaceutical company?

This raises the question what is “business as usual,” for pharma?  The answer is simple:  “There is no such thing as business as usual for #pharma.”

I began reporting on the changing space of #pharma after the Babson Life Science Conference in 2010, where Matthew Emmens, CEO of Vertex Pharmaceuticals in his keynote described his vision for the future #pharma

” Emmens recognizes that treatment for the majority of ailments, e.g. acid reflux, has and will continue to grow over the counter.   Therefore, the future is about creating a biopharm industry that is responsive to challenging disease that will address the 150 different types of cancer and growing number of systemic ailments. The challenge will be to fund this innovation and research and organize an investment formula that is dedicated to this new emerging market. “

Scott Johnson, CEO and capacity building, Myelin Repair Foundation has proactively since 2004 initiated discovery of an accelerated methodology that leaps beyond what Johnson describes as the Valley of Death. 

Any person diagnosed with a chronic or life threatening illness faces this valley emotionally and physically upon diagnosis.  This person lives in the context of questions:

  •   Will there be a cure for me before  I have to face total disability or impending death?
  •   Can I  sustain the cost of treatment to assure a quality of life out of which I can sustain myself and live?”

Johnson developed with his colleagues, an accelerated research collaboration , the describe as ARC. This model was put to use and built capacity for acceleration by  a group of researchers drawn from 4 academic institutions to combine their agenda in search of a cure.  Johnson with the Myelin Repair Foundation raised matching funds of $40 M and this matched the$40M of combined funding the academic research institutions had.  Drawing from resources from 4 medical schools, the community organized an agenda to leap beyond the “valley of death” where so many patients with MS get lost.

Myelin Repair Foundation in contrast to the FDA

Social innovation expert,  David Bornstein recently compared the results generated by the FDA in 2008 to what has been reported by MRF

In his NYTimes Editorial,  Bornstein reported that  Food and Drug Administration approved 21 drugs for use in 2008, in the same year 800,000 medical research papers were published exploring the cure for disease.  In contrast, the collaboration formed for MS research  by Scott Johnson led to these results:

  1. identification of over 150 novel potential targets;
  2. development of  24 new research tools for broad application to other neurological disease;
  3. filing two US patents and applied for 16 more;
  4. publication of 50 peer review articles;
  5. the launch of  broader collaboration with pharma companies;
  6. extending this research base for benefit to 70 other disease categories.”

Reporting on the pharmaceutical industry is growing complex, especially as more and more companies step their toes into examining the ethic of sustainability and corporate social responsibility.  The complexity ties to growing questions about how to oversee patient involvement in clinical trials for the progression of research, treatment and cure.

When does the patient become a guinea pig and when does the growing differences in approach to clinical trials internationally become an obstacle to the potential cure or treatment of disease? and when is quality of life more important than treatment?

There is a growing recognition of the implications of the quadruple bottom line (4bl) and its implications to health for people, environment, ethic and planet and its implications of how any company approaches any  initiative for health and treatment.

Sanofi Aventis has come to recognize that this context may in fact imply a process of learning and inquiry that implies shifting their corporate strategy beyond the tradition of how pharmaceuticals go about business as usual. In 2009, CEO Chris Veihbacher  announced  Sanofi’s  clear commitment to improve the health of as many of the 6.8B people walking the planet. With the publication of its 2010 report, a value was expressed to deepen this mission by describing itself as a global health care leader.

In coming to this conclusion, Sanofi has asserted an ethic to contain as part of their strategy and development model to appreciate today’s human economic challenges and factoring in societal issues of cost of health care and treatment, chronic illness pandemics, e.g. Diabetes, and access to medical care in its priority from a global view.

Sanofi Aventis continues to be a company to watch and learn from.  It is a company that has adopted transparency, so please do not look to Sanofi for perfection and answers to copy. Sanofi has added to its agenda the difficult question of how to balance profit and sustainability.  It is a systemic approach that moves beyond the traps of green marketing described this week by Joel Makower, “Green Marketing Is Over. Let’s Move On.”

Sanofi Aventis is acknowledge what I first heard described by Matthew Emmens, when he said pharma was moving beyond the marketing of generis to face the reality of responding to the activism and demand from communities of people living with chronic and life threatening illness.

The new health care leader will be paying heed to what the Myelin Repair Foundation response to the valley of death.  Pharma companies will be regroup into consumer goods, wellness products and services, treatment and cure innovation and much more.

Sanofi Aventis,  Novartis and GlaxoSmithKline are all early stage members of the UN Global Compact will continue to be companies to watch that are helping to author a new leadership and market place in support of health. In this context,

I believe we will be reading more about the annual cost of living with a chronic or life threatening illness.

I believe, we will be reading less about what pharmacy offers you or what generic drug is available for the least cost.

In the not to distant future,  I believe we will be reading more about how treatment, procedures, equipment is organized for ease of access and how the expense will be covered by patient and health coverage (insurance, government and assistance programs, and medical savings accounts) and what that implies to the supply chain, consumer product distribution and retail.

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Authors bio:

Lavinia Weissman is an sustainable market leadership coach, journalist, and publisher of thestoryofmeaningfuluse.com. As a speaker she describes the new emerging patterns of markets shaped by sustainable market leaders and the social networks they work with and employ.  As a coach, Lavinia works with all her clients to inspire professional development that assures a person the opportunity to embed sustainability as a leader into the network and culture of people they work with.

Launching an Action Research Lab to Impact Health

Warning: Living and Working in Most Countries is Bad for the Health of Most People!

By Lavinia Weissman

@WeCareHealth

Boston MA

I believe if I surveyed people I know and respect, the survey would conclude that incremental change has never been a sufficient response to all we know that is harmful to the global economy right now.. I also believe for that my quality social network would represent some remarkable insights into what is next. Within my network there are 3 streams of thought in order of least impact.

  1. People who want change but are skeptical that accelerated change is possible.
  2. People who have authored the thought leadership for accelerated change.
  3. Leaders, who know how to build and lead into practice practical scale projects that are a foundation for accelerated change.

The accelerated change  we are looking for has stopped denying the acceleration of harm and its consequence that people are living with around the world that needs a response and recognizes the significant cash investment that is required to find a response to the harm that is far greater than fixing the harm.

These are people who understand that in the United States our systems of economy that assure an system of living ecology are broken beyond fixing. They include how we assure

  • Accessibility to quality education;
  • Access to an employment track  that sustains any person able to work competently with livable wage;
  • Resources for health (not health care) that can be adopted into how people live and work;
  • a response and resources for health to half the population of the United States that now lives with a chronic illness, so these people can live in health and sustain;
  • Replacement of broken infrastructures leaking environmental toxins and chemicals that prevent people and regions to replace community and regional infrastructure that impacts our use of energy and assures sustainable housing and networks of communication that assure impacts of health.

Ultimately, the building and discovery of this kind of change that is of societal scale based on a value for health for people, planet, environment and economy is fundamental to how we build capacity for an ecological system that assures life and health within the realm of science, technology and humanity that shapes our eco-systems to thrive or destruct.

In recent months, I have been quietly reflecting on how to construct a list of people to invite to a meeting sometime in the next six months who understand and are acting on this agenda to accelerate a change that impacts through a combination of their efforts over 1B people living in a global economy.

It is my intention that the first group of leaders that I convene through a personal invitation will join this community (30-50 people in size) to form a portal of opportunity that builds a new way of how the United States relates to a global economy while building a system of relationship that returns health to its local communities.

Government is the least prepared to do this and it has to be a hub  of leadership that draws across every sector participating to build a new global economy that sustains and measures health for people, earth, environment and economy.

That thinking has been validated by the Rockefeller and Skoll Foundations. But now in the US, there is a reality of government shut down and daily monitoring of government in chaos @ Huffington Post. Americans now believe it is not either the Republicans or Democrats fault. The chaos is due to both in creating an ineffective government.

The 2012 Presidential election and campaign cost is already proejcted at $2b. If we stopped spending the billions of dollars in media, advertising and corporate lobbying of government officials, we would have significant cash resources  to create a system of education.

Two Billion would more than adequately fund in my opinion education for people on  how to live  ecologically that assures a respect for living on the basis of “doing no harm,” and operating out of values that teach everyone the impacts, good and bad, on our communities, people and culture that help all of us sustain.

When I first started thinking about how to write this article, I wanted to learn how to write something that would stir people’s thinking as a call to action rather than build another causal campaign. I sought inspiration from other media and people I respect.

I reviewed a few web-broadcasts.  One was  organized by Aman Singh, @vaultcsr, Reimagining CSR as an Engine of Innovation, Profitability and Purpose. Immediately after watching this broadcast, I went thought the new broadcasts promoted by the  Skoll World Forum of Social Entrepreneuership.

What was contained in all the broadcasts and articles was of value without question. What was  not made clear is how these events would influence others to carry out real time accelerated change.

By real-time accelerated I change, I mean change that will produce a tangible shift in the  global economy to sustain people by building capacity for people to solve the problems that are not being solved, e.g. the lack of jobs for the workforce, resources for people who are ill and assurance of access to the education of systemic scale that builds an infrastructure that educates people to live in health and do no harm to their health, the health of others, the environment, earth and economy.

Could any of these events influence more rapid constructive response to the harm now alive in Haiti, the Gulf Region and Japan?

Beyond Skoll and Vault’s broadcasts, I found qne reread 2 articles describing recent personal trauma to Joe Sibilia and his mother in Springfield MA. These episodes while far less dramatic than Katrina and the BP Oil Spill  reflected  to me ultimately the worst effects of a bad global/country  recession   on a local community of no fame and how it works to survive without any real glamor.

The commentary, story and thoughts in both these reports are a demonstration to me of why the harm of a few is having such negative impact on so many.

Joe was a keynote speak at the 2011 Intertek Ethical Sourcing Forum, where he received news that his mom had been attacked in her home in Springfield MA where Joe and all his family lives and which is where he chose to establish headquarters for CSRWire.com.  In this community, Joe described

– the scene of both attacks – was the area in western Massachusetts where CSRwire is based. “There are 1,200 young men between the ages of 17 and 24 that all share these characteristics,” he started, “they are convicted felons, they’ve never held a job, never graduated from high school, they don’t have a GED and they have no male role-models.”

Events like these alter a person’s perspective. Shortly after Joe was informed of the attack on his mom, Joe altered his hour long keynote and gave this  5 minute brief keynote captured by  Emily Drew, a journalist with BCLBblog.com @ CSRWire talkback.

Sibilia said his team chose to base CSRwire in this troubled community because they want to be a part of the solution. He implied ethical sourcing – the theme of the conference – was part of a larger cultural shift, where people are becoming more aware of how their own social and economic choices affect those beyond the transactions:

“In the future you’ll decide who you do business with based on their values, where they operate, what they do, how they think, what they believe, if they can be trusted, whether they really do what they say they’re doing. And you will create a new economy based on ethical business practices. And then you won’t have to worry about getting hit by a car or having your mother attacked. The wealth will be a bit more distributed and society will be a better place for us to live in. I really can’t emphasize enough that the work you’re doing is so inspiring to me.”

At the time of Joe’s keynote, I was  in Western MA to visit with a long time colleague, who has always had my respect; David Surrenda, the new CEO of Kripalu Center for Yoga and Health.


David and I had a brief conversation where I got a clear understanding of his current mission as a global educator and leader.  I took a tour of the facility at Kripalu. In organizing my plan and budget, I wanted to evaluate Kripalu as a potential location for the meeting I plan to produce related to this article.

Following my meeting with David, I spent the weekend at Kripalu and found it a good place to just quietly reflect on what I want and how to organize my strategy for launching a professional leadership group committed to accelerating change.

I am still reflecting on the conversation I had with David, unrelated to my facility tour.  David gave me a context for thinking that aligned with my passionate belief that health is far more than health care and sustainability will not integrate into our eco-economy until society and the communities it contains define what that means drawing on views from every sector and locally applied to culture and local economy.

David Surrenda’s fearlessness and history as a CEO, NGO Exec. Director, Consultant and Educator inspired me. I needed that kind of refueling. I had become very tired of having to always self-sustain and am working hard to change that.

While there are many people giving thought to what i think about, the world pace and form of working has become isolating and I know as many do that real time accelerated change cannot be achieved if people do not learn how to convene in learning groups that apply their learning.

The meeting I have in mind is about creating a portal gateway to a global community of people who convene, learn and apply.  I believe Kripalu Yoga and Health Retreat Center is an extraordinary place to convene the people who integrate the thought leadership for application in local communities influenced by global economies.

Let me know what you think about how to build an action research lab for accelerated change? How do you fit? What needs would have to be addressed to synthesize an energy of impact that embeds sustainability into the culture and impacts change of societal scale?  Can you show yourself to be a person who can contribute value to this kind of conversation?  Why?

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Authors bio:

Lavinia Weissman is an sustainable market leadership coach, journalist, and publisher of thestoryofmeaningfuluse.com. As a speaker she describes the new emerging patterns of markets shaped by sustainable market leaders and the social networks they work with and employ.  As a coach, Lavinia works with all her clients to inspire professional development that assures a person the opportunity to embed sustainability as a leader into the network and culture of people they work with.


Diagnosis: Brain Tumor – Daily Treatment: A Village of Connection

How Harmony Village formed a Common of Healing for a Neighbor.

by Dave Wann

@WeCareHealth

Golden, Co

Social connections heal and restore us. That scientific fact was crystal clear when a health emergency hit my next-door neighbors a few years back. I was up at 5:30 a.m. one morning this past summer when my neighbor Phil Lohre raced across the front lawn and directed an ambulance to the front of his house.

I didn’t want to be a nosy neighbor but I did want to be available if my friends needed help, so I stood on my front porch as the crew rolled Phil’s wife, Julie, out on a gurney. I found out later that day that she’d had a seizure and had a tumor in the front of her brain.

The first thing that occurred to her is that she had to write her three children a letter with her best life lessons, love, and wisdom – just in case. The kids — who I’ve watched grow from beans to beanstalks — were at summer camp a thousand miles away, but Julie and Phil decided to fly them home the next afternoon.

“We realized that we aren’t separate from them,” she says. “They were important to our decision-making process.”  As the Lohres began their intensive research on the science of Julie’s condition, Phil was her first strong pillar of support. Julie is a nurse practitioner and is very well versed in health science, but the details of the various treatment options were extremely complex.

Phil’s note-taking and sharp intellect helped the pair equip themselves with the right information. For example, they opted not to have a separate biopsy done since the tumor would have to come out in any case, whether it was benign or malignant.  They flew to New York for a second opinion, and kept their wits about them as they gathered information. “Without Phil’s support, I would have felt overwhelmed,” says Julie

Neighbors began cooking meals for the Lohres; old friends brought perennials to plant in Julie’s garden; and Julie began to shift into a different mindset. “I started to look at life’s priorities in a totally different way,” she says.  “While I waited for a few weeks to have the surgery, I wanted laughter and music in my life, and I wanted to avoid labeling. Yes, I had a brain tumor, but that shouldn’t prevent me from still feeling good…”

She began to slow down and reassess where her time and efforts were going.  Her son, Will, asked if she’d play pool with him. “Normally that would be something that would go on my To Do list – ‘spend quality time with Will’ – but that afternoon, I STOPPED and played pool with him. We had a great time!

I found out how good he was; who had taught him to play; and how they sometimes cheated, just a little. When we slow down and look at things differently, we see there’s an underlying rhythm and vividness to everything.” She gets out a card that her daughter Lisi had made for her: “Wherever you are and whatever you do, we will be there with you.”

As a precaution, after the tumor was removed, Julie was scheduled for 31 low-dose radiation treatments over a six-week period – a huge effort, especially since she couldn’t drive. Twenty different people offered to drive her to the hospital and wait for her – at least a two-hour commitment. “The support I got from people was awesome!” she says. “I felt like I was being carried by the positive energy people gave me.”

She made each trip to the hospital into a productive healing session. For example, when I took her, our discussion was about visualization.

She wanted to clearly and decisively instruct her immune system what to do with all uninvited cells in her body, and we talked about sending them to a virtual compost pile. Julie’s prognosis continues to be excellent, and no doubt all the intentional thoughts and support have played a key role.

Excerpt from Simple Prosperity


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Publisher’s note: Spring 2007 – I lived as a temporary resident of Harmony Village and the Loehr’s and Dave Wann were my neighbors. I was healing from an environmental accident and toxic exposure that forced me to leave my home.  It was on this village common at Harmony Village I watch a community of people create life out of social connection and a commitment to every neighbor to have the ability to work well to live wisely.

Julie Loehr and i share a background in a health care system that is very broken. Our shared value is to love the people we care about and support them through the transitions that life brings to everyone any age. Julie’s children that year learned about how precious life was at a very young age for lots of reasons.

The family stayed strong, was able to sustain financially and give each person the space they needed to heal from the physical and emotional stress surrounded by friends and family in a way that is not something common to most neighborhoods in America today.

Over the next six months, I traveled and met many people in many co-housing communities. It is hard to explain, but Harmony Village which is of modest size and supported by its garden and neighbors is unique to any co-housing community I visited that year.  Every person no matter diversity, health status or personality simply matters.

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Authors bio:

David Wann is an author, filmmaker and speaker on the topic of sustainable design and lifestyles. He is the author of The New Normal: An Agenda for Responsible Living (St. Martin’s Griffin, 2011) and contributing editor to thestoryofmeaningfuluse.com.