A GLOBAL SHOUT: How Will You Celebrate Stem Cell Awareness Day?

By Don C. Reed

September 23 is the world’s second annual Stem Cell Awareness Day (SCAD).

This year, we have a lot of reasons to celebrate. Just to name three:

1. President Barrack Obama authorized a relaxation of America’s restrictions on federal funding of embryonic stem cell research. The revised NIH guidelines have just been released; they are sensible, and can be worked with. I was worried, because the opposition had mounted a major national campaign to try and derail the research; but they did not succeed. Hope won; fear lost. This will help every state that has a program or wants to start one.

2. Despite relentless opposition, the California Institute for Regenerative Medicine (CIRM) continues to “go forward”, as Christopher Reeve always said. The CIRM has already awarded $761 million in research and facilities grants—and has brought in roughly one billion dollars more additional funding in matching grants and donations. An incredible 300 (three hundred!) published scientific papers resulting from CIRM-funded work brings us incrementally closer to cures for chronic disease and disability.

3. Assuming no last minute glitches, the world’s first human trials with embryonic stem cells will take place in a matter of days: Geron’s and Dr. Hans Keirstead’s long-awaited spinal cord injury effort, to try and ease the cruel grip of paralysis. (Readers of this column may remember this work was originally funded by California’s Roman Reed Spinal Cord Injury Research Act, named after the author’s son.) Although this first set of trials is primarily a safety test, the excitement is palpable; around the world people suffer every day, without the hope of cure, and now, for the first time, there will be actual official, verifiable tests of a way to repair the damaged nerves inside newly injured people…

So– how should we celebrate Stem Cell Awareness Day?

Last year, the main event of the first Stem Cell Awareness day was an Australian/Californian joint video conference, with scientists on two continent’s bringing the research to world attention.

And this year?

The California Institute for Regenerative Medicine (CIRM) is once more playing a coordinating role for Stem Cell Awareness Day activities — here is a note from Ellen Rose, who is helping to coordinate those events.

“Stem Cell Awareness Day will be celebrated on Wednesday, September 23, 2009. Events are being planned in California and around the world to engage the public in a variety of activities that raise awareness of stem cell research.

“CIRM is helping to coordinate a series of public events in California as well as offering an exciting classroom opportunity on that day for high school students and science teachers.

“Helping to educate and inform the next generation of scientists is an important part of CIRM’s outreach mission. Science educators are on the front lines of that broader effort and CIRM hopes to support these efforts by making stem cell researchers available to visit high school science classes to present a module on stem cell science and/or take questions during class on September 23rd.

“If you are interested in participating in this state-wide activity, and would like us to match a stem cell scientist with one or more of your classes, please email Ellen Rose at CIRM: erose@cirm.ca.gov. We will be matching local researchers with classrooms in the fall.”

There will be more from Ms. Rose and the California Institute for Regenerative Medicine as the day approaches.

Where will you be on September 23?

I personally plan to celebrate the day at the Genetics Policy Institute’s World Stem Cell Summit, in Bethesda, Maryland. I have no idea what GPI Founder Bernie Siegel has in mind by way of noting the day, but, knowing him, it will be special. For the silver-haired promoter of regenerative medicine, every day is Stem Cell Awareness Day!

If there is any way you can make it for the World Stem Cell Summit, folks, September 21-23, I absolutely recommend it. GPI stem cell events are not to be missed. I have been to them all, and every year I think, there is no way he can top this one—and then the next one comes along! Last year’s Summit was at the birthplace of stem cell research itself, Madison, Wisconsin– this one will be at in the hometown of the FDA, Bethesda, Maryland: at Johns Hopkins University, hosted by Maryland’s State University system.

A fact sheet on the event follows at the bottom of the page: for more information, click on https://www.worldstemcellsummit.com .

Now– what else can we do on September 23—Stem Cell Awareness Day—how can we make it memorable?

If you belong to a group, is there something you can do to mark the day? Maybe a little party, or that low-key fundraiser you have been meaning to do?

As you know, Proposition 71 was supported by more than 70 groups, large and small— medical, scientific, research or disease awareness groups– do you belong to one of those?

Could you contact the leadership, ask if they could announce Stem Cell Awareness Day, send an e-blast to the membership, reminding them about September 23rd?

Celebrating Stem Cell Awareness Day on September 23 is important. We need to remember how far we have come, and the attacks we have weathered. The hard work is paying off.

We are the patients and families, the scientists, doctors and therapists, the government leaders and taxpayers, everyone who believes that cure may come.

Think what we have accomplished.

Can you name any other medical advancement in the history of the world that has been so driven by patient activism?

It has been an uphill battle all the way: countering the forces of inertia, fear, and ignorance.

If you are an advocate, you know. Thousands of people labored long years to get us where we are today. Some are no longer with us. We should remember their sacrifice, honor their memory: appreciate the good that has been accomplished, the hope for what is to be, the future we can only imagine—as we fight to make it possible.

Think of Michigan, Texas, New Jersey, Connecticut, Maryland, Georgia, South Dakota and more—tremendous fights, some we won– and some we lost.

But we are going forward all the time. Even some of the battles we lost brought light as well as heat. True, we have not won in every state: not yet. Some states are disaster areas in terms of research freedoms, with actual jail sentences threatening stem cell scientists.

But it will not always be that way. The people of every state love their families exactly as we do—when cures start to come, leaders everywhere to face reality.

A movement has been born, which will one day touch the lives of everyone on Earth.

You are a part of that effort.

What will you do on September 23rd?

And the ultimate? If I can dream for a moment…

Do you remember the old great movie, NETWORK? In it, the announcer (Peter Finch, in an Academy Award-winning performance) asked everyone to lean out the window of their house, and yell:

“I’m mad as Hell– and I’m not going to take it anymore!”

My dream is quieter than that, but bigger, much bigger.

What if everyone who could be affected by stem cell research (everybody on earth!) would stop what they are doing, just for a moment, and just go outside, in front of their homes or places of work.

That’s all. Just go outside. Every street on Earth would be full. For a moment, all would be silent, as we realized the power of our numbers.

Visualize all of us, how ever many hundreds of billions of people that is, all stepping out of our houses, coming right out in front, families, friends, neighbors, all of us.

The smallest whisper would echo around the world, uniting us all. Think of that.

If we all just said the words of Christopher Reeve, very softly:

“Go Forward.”

If it came from all of us, those two words would add up, becoming a roar that would build and build until it could be heard on Mars—a global shout.

Even the most stubbornly obtuse politician could never ignore us again.

September 23rd. Celebrate Stem Cell Awareness Day. And make a little noise.

Contact your local paper, let them know what you have in mind. Remember, 70% of everything in a newspaper is “planted”: put there by the subjects of the article. Just make a one-page letter about your event, large or small. Call them first, tell them about it, ask if you can send them a news-release. They will always say yes, because they will at least want to consider it. Then you e-mail the news-release, and chances are, they will either send a reporter to cover your event, or at very least run your announcement.

In either case, you won; you advanced awareness of stem cell research.

And that is the purpose of Stem Cell Awareness Day: this coming September 23rd.

How could we celebrate this day? Drop a line to Karen Miner and me at stemcellbattles@aol.com, and share your thoughts.

Now, here is that Fact Sheet I mentioned, on the World Stem Cell Summit.


Conference Overview:
Presented by the Genetics Policy Institute (GPI), the Summit is hosted by Johns Hopkins University, the University System of Maryland, Maryland Department of Business and Economic Development, Maryland Technology Development Corporation and Maryland Stem Cell Research Fund.

With more than 150 sponsors, supporting organizations and media partners, the World Stem Cell Summit is the flagship, networking event, bringing together the founding visionary researchers, clinicians, business pathfinders, key policy-makers, regulators, advocates, experts in law and ethics to present compelling presentations, share information, and together chart the future of regenerative medicine.
The comprehensive, multi-track program covers all areas of stem cell science (hESC, adult and iPS), disease models, drug discovery, tissue engineering, scaffolds, bioreactors and nanotechnology. Five panels covering progress reports for cancer, diabetes, spinal cord injury and multiple sclerosis, Parkinson’s/ALS/Neurological Disorders and cardiovascular disease. Numerous panels cover commercialization, funding, economic development, Federal agencies’ perspectives, law and ethics.
Conference Co-Chairs
Curt Civin, University of Maryland; Chi Dang, Johns Hopkins University; Linda Powers, Toucan Capital Corp.; Karen Rothenberg, Maryland Stem Cell Research Commission; Bernard Siegel, Genetics Policy Institute
Sample Conference Speakers
Leading scientists: Irving Weissman (Stanford), Anthony Atala (Wake Forest), Ronald MacKay (NINDS), Sally Temple (NY Neural Stem Cell Foundation), Stephen Minger (Kings College), Jeanne Loring (Scripps Research Institute), Doris Taylor (Minnesota)

Key Policy Leaders: Gov. Martin O’Malley (Maryland), Gov. Jim Doyle
(Wisconsin), Bob Klein (California Institute for Regenerative Medicine), James Greenwood (Biotechnology Industry Organization)

Business Leaders: Mahendra Rao (Invitrogen), Alain Vertes (Roche), David Amrani (Baxter), Martin McGlynn (StemCells, Inc.), Michael West (BioTime), Jane Lebkowski (Geron), Ian Ratcliffe (Stemgent), Paul Grayson (Fate Therapeutics).

Medical Philanthropy: Alan Lewis (JDRF)

Conference History:
The 2009 World Stem Cell Summit marks the fifth annual summit presented by GPI. Past event partners include: University of Wisconsin-Madison Stem Cell & Regenerative Medicine Center, WiCell Research Institute, Harvard Stem Cell Institute, Stanford University, Baylor College of Medicine and the United Nations.
Conference Attendees:
The Summit will attract more than 1,200 of the most influential stem cell stakeholders from 25 countries representing the fields of science, business, policy, law, ethics and advocacy. 100 plus internationally renowned speakers will be present—producing a unique international network designed to foster collaborations, economic development, technology transfer, commercialization, private investment and philanthropy.

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