A Tale of Two Hope Machines, 1.2

One thing that LIVESTRONG has that Red Treehouse and UCP don’t is its own manifesto. A manifesto is a public declaration. It makes me think, “bold" -- to the point of “in your face.” I also think, “change.” Manifestos are connected with efforts to change the status quo. They're part and parcel of movements of all sorts. 

LIVESTRONG is a movement that was founded on passion, emotional energy, and trust (a blend of hope, faith, and confidence).* It exists to help cancer patients and their families live their days to the fullest, and to help them tackle intensely personal things -- HEADON.

Just an observation: 

In my very limited experience – I've had no exposure, for example, to any of UCP’s affiliates – I can’t say that I feel like UCP and Red Treehouse are trying to build those same sorts of personal and emotional ties between me-and-my-daughter and them. "Life Without Limits" doesn't feel like a movement to me. 

For better or worse, neither of the two organizations is conveying anything so rousing as...

LIVESTRONG Manifesto

We believe in life. 
Your life. 
We believe in living every minute of it with every ounce of your being. 
And that you must not let cancer take control of it. 
We believe in energy: channeled and fierce. 
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything. 
This is LIVESTRONG. 

We kick in the moment you're diagnosed. 
We help you accept tears. Acknowledge the rage. 
We believe in your right to live without pain. 
We believe in information. Not pity. 
And in straight, open talk about cancer. 
With husbands, wives and partners. With kids, 
friends and neighbors. And the people you live with, work with, cry and laugh with. 
This is no time to pull punches. 
You're in the fight of your life. 

We're about the hard stuff.
Like finding the nerve to ask for a second opinion. 
And a third, or a fourth, if that's what it takes. 
We're about preventing cancer. Finding it early. Getting smart about clinical trials.
And if it comes to it, being in control of how your life ends. 
It's your life. You will have it your way. 

We're about the practical stuff. 
Planning for surviving.  Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers. 
It's knowing your rights. 
It's your life. 
Take no prisoners. 

We're about the fight. 
We're your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in research labs. 
And we know the fight never ends. 
Cancer may leave your body, but it never leaves your life. 
This is LIVESTRONG. 
Founded and inspired by Lance Armstrong, one of the toughest cancer survivors on the planet. 

*with a nod to David K. Hurst

A Tale of Two Hope Machines, 1.1

It was already in my notes to research the ways in which LIVESTRONG and other “most admired” health non-profits like American Cancer Society are using social technologies to build hope and keep it alive. What wasn’t in my notes – and what took me by surprise, I must say – was to have what I had planned to look for...find me. In my car. On my radio. In the form of a public service announcement from the National MS Society. 

What got me about the psa was its relevance to this series. The point? To drive traffic (by driving those of us who were in traffic) to a new web site: www.msconnection.org. The point of the new site? To be a platform for sharing ideas, for "giving what you know." The rationale behind it? Lots and lots of caring and connected people is the best hope for slowing MS down -- if not obliterating it altogether.

For now, you can visit this page to hear and /or see the psa. (radio and TV formats)

A Tale of Two Hope Machines, 1.0

“Lance Armstrong cheated.”

“Lance Armstrong‘s a terrific athlete. Y’ know, he swam competitively as a kid…”

“Lance Armstrong is a hope machine.”

Of the opinions I’ve heard voiced since Lance Armstrong was banned by the U.S. Anti-Doping Agency (USADA), the last one sticks out. A hope machine. For having survived cancer. For his seven Tour wins in a row. For the LIVESTRONG Foundation: a top-ten funder of cancer research worldwide and source of inspiration and empowerment to many.

What, if anything else, has ever called to my mind the words “hope” and “machine” together? Is there a Lance Armstrong equivalent in the cerebral palsy (CP) world? 

*  *  *  *  *

When I met Leif Smith and Pat Wagner, they were operating what they called “a general store for explorers” in Denver and making a rather unusual offering. I don’t remember how the value proposition was worded, but their service worked as follows. For a small investment – a little bit o’ dough and an earnest effort on my part to put into words what I most wanted to explore (my “passion”) – they would provide me with custom-tailored information: names and descriptions of people from around the world who could help me progress, i.e., forge ahead. 

In machine-like fashion, they used my query, my quest, as raw material / input...added value to it...and generated a report /output.

The report I received from them in return was impressive. As much as I valued the content, though, I valued learning that there were other people out there with similar interests even more. It "proved" to me ( the evidence was right there in writing ) that you don’t have to stay stuck. There’s no such thing as a dead end. You don't have to give up.

Hope.

*  *  *  *  *

You may have guessed that that hope machine predated the Internet. Both parties to the transaction used typewriters and twenty cent stamps; the whole process took a couple of weeks.

Nowadays…

What with today’s digital infrastructure, you can pretty much do everything we did then in a matter of seconds. You can search for and find hope online – by going, for example, to www.livestrong.org.

Or to www.redtreehouse.org. 
Or to www.ucp.org.  

The second and third have been on my radar of late because of my interest in knowledge flows in the CP world, and, because of some specific initiatives they’ve independently launched.

The organization behind www.ucp.org I’ve known about for some time: United Cerebral Palsy (UCP) and its nearly 100 affiliates have "a mission to advance the independence, productivity and full citizenship of people with a spectrum of disabilities by providing services and support to more than 176,000 children and adults every day—one person at a time, one family at a time.”

As for www.redtreehouse.org, I only recently stumbled on it. Red Treehouse was born of a partnership between Ohio Family and Children First (OFCF) and the Ronald McDonald House® of Cleveland, Inc. (RMH). It was formed for the benefit of kids with chronic illnesses and disabilities to provide an online place for families and professionals to DISCOVER ANSWERS. MAKE CONNECTIONS. FIND HOPE.

Although they have different ways of saying it, these organizations have taken it upon themselves to become significant sources of inspiration and empowerment. They're hope-machines-in-the-making. I’m very interested in what they're striving to do. Especially as it relates to their efforts to harness the power of the Net to those ends.

That's what I hope to explore via a series of posts. I have some ideas about the analyzing lenses I'd like to look through. I don't, on the other hand, have many ideas about where things may lead. 

I only hope -- myself -- to be helpful along the way, 'cause I'm supportive of both organizations.