Rare Parkinson's Heroes Who Changed the World
Mr. Lloyd Tan is the icon and hero of the Parkinson's community. His spirit lives in us forever. Let us feel his energy as he guides us to live with Parkinson's, reaches out to us to give hope and inspiration.

by Don C. Reed

An act of personal kindness can mean so much, can’t it? One touched me the other day.

My printer was jammed-a sheet of paper wedged inextricably – I could only get little pieces out.

Life without a printer? I knew mine was getting increasingly ancient, and would have to be replaced, sooner rather than later – but times were tight financially.

What to do, what to do? I had just bought a new re-filled second-hand cartridge and the people who sold it to me seemed nice� so I called them up and told them – and they were nice enough to say bring it over. They spent 45 minutes taking the printer apart – and freed the rollers.

That’s why I am giving a free Christmas plug to CARTRIDGE WORLD, owned by Dominique Woon, at the Gateway Shopping Center, Fremont CA 94536 Ph. 510-790-2023 ([email protected]).

Christmas moments..,

I was talking to New York scientist friend, Mark Noble the other day, and the conversation was just getting to the point when I would ask him for another favor (that is the secret of my success by the way – have friends who are smarter than me, and who are also good-natured and talented and willing to consider helping with just one more chore) when suddenly his voice changed. I heard laughter in the background, and Mark said:

“But this is impossible!”

His daughters who had flown in for a surprise birthday party to celebrate his sixtieth birthday! And with them were Doctor Sally Temple and other luminaries of the New York stem cell scene.

Even I was willing to let him off the hook that time, so he could go enjoy that magical moment! (Of course, I called him later�)

We have so much to be thankful for, in this our stem cell world.

For one thing, we have a friend in the White House now! Merry Christmas, President Obama! Thank you for supporting science in general, and stem cell research in particular!

And a special thank you to all the scientists who spoke up during the previous administration, when it was not always wise to do so. Elizabeth Blackburn was removed from the Presidential Biomedical Advisory Commission when she objected to ideology rather than science motivating policy – she later received the Nobel Prize for her work identifying telomeres, which I forget what they are, except they are important for the growth of cells.

People spoke up, like the 80 Nobel Laureates who spoke up on behalf of embryonic stem cell research, to try and persuade President Bush to all federal funding for new stem cell lines. And the 100 university deans who did the same – you know how difficult it is for the head of a college to take a political stand?

I am grateful our friends in the House and Senate, who have fought for stem cell research (all forms) since HESC (human embryonic stem cell) was first isolated in 1998. People like Nancy Pelosi, Tom Harkin, Orrin Hatch, just to name a few of the hundreds who stood up when it mattered.

Perhaps most of all, on behalf of patient advocates everywhere, from us and our families, I send a holiday hug to the scientists, every stem cell researcher on this planet, whatever your specialty: adult, embryonic, Induced pluripotent, SCNT – thank you.

And thank you to the fighters, the people who will not quit, no matter what, even at the cost of their own health, and by so doing, bring us all closer to cure.

People like Joe and Nina Brown, the stalwarts of Texas, though they are taking turns going to the hospital! No more of that nonsense, please, your motto for the New Year is to be healthy!

And the quiet warriors, people like Karen Miner, Susan Rotchy, Fran Lopes and all the folks at Research For Cure, working away, year after year, raising money for research at the University of California at Irvine.

Naturally Bob Klein, as one appreciates Everest. We all know how difficult it is to raise a dollar or two for research-but to raise billions?

The staff at the California Institute of Regenerative Medicine, the CIRM – past, present, and future. The world knows about President Alan Trounson and chairman Klein – but only insiders know the great gifts of people like Jennifer Pryne, Melissa King,  Pat Becker, and Jaye Huntington. Without them, our champions would sink in an ocean of hopeless disorganization!

California legislators like California’s Gloria Romero, Dean Florez, Anna Eshoo, Pete Stark, so many more! Our own Art Torres, former California state Senator, working full time for the CIRM, using the skills of a political lifetime to advance the cause of cure.

Champions fallen, but who will never be forgotten: Edward Kennedy, whom we lost, but who is with us in spirit, working toward the day when quality health coverage is an expectation for all people. Christopher Reeve, whose bill was finally passed-hidden inside an agricultural bill, shame on the opposition-Christopher’s greatness soars on.

Of course, I am glad for my family. Like yours, they are priceless. Gloria: for the years of laughter, and love. Roman, for blazing courage. Desiree, for amazing determination, associate athletic director at the University of Tennessee;  Terri and Josh, for putting up with my son and daughter and brightening every day of their lives; Roman junior, my first grandson, for his sweet kind heart; Jason, for a smile which warms the room and great coloring skills, always staying within the lines; Jackson, the only 5 year old who ever asked for an appointment with the principal to discuss a change in color for the school uniforms; our grand-daughter, 7 month Kate, for her new teeth to savage an apple; for my father, Dr. Charles H. Reed, for living his Christian faith in acts of kindness.

Scientist Activists: Larry Goldstein who set aside his personal calendar to fly to Texas and Nebraska in their hours of greatest need; Wise Young and Patricia Morton, never resting, always working to find cures for paralysis.

And for greatness given, but seldom credited-people helping pass California’s Prop 71.

Gloria and I drove down to Los Angeles to visit my sister Barb, who is still defying the odds of cancer and leukemia, she and husband Chris are living strong.

And while we were there, we attended the Southern California portion of the 5-year anniversary of Prop 71, a thank you to the 7 million voters who made the California Institute for Regenerative Medicine possible.

There will be a part 2 next month if all goes well, and you bet I will be there cheering.

But Southern California was where Prop 71 began, and it is fitting that our 5-year anniversary be celebrated here first.

What a night!  Out the window, the college my daughter went to, UCLA. (The food was terrible, that fancy-schmancy stuff that’s good for you, while I looked around for something with the three food groups, grease, sugar and salt.).

Bob Klein was master of ceremonies, of course, introducing (just a few of the folks whose efforts made Prop 71 possible.

Naturally there were talks by scientists, but (mercifully!) these were short- “three minutes”, Bob said, and some of them actually were that short!


Dr. Karen Aboody, City of Hope
Dr. Donald Kohn, UCLA
Dr. Mark Humayun, USC
Dr. Eduardo Marban, Cedars-Sinai
Dr. Dennis Slamon, UCLA
Dr. John Zaia, City of Hope

These were leaders of hand-picked groups fighting for a breakthrough soon – not twenty years from now, but four – within the life of their grant, to have a drug or treatment ready for testing. This is really an astonishing timeframe.

I was in a mood to just smile till my cheeks hurt, and clap my hands now and again, and hope to see some of our greatest friends – is that Janet Zucker over there? Yes, it is, her cheerful determined face beaming as Bob called her and Jerry up for a special award. (Jerry could not make it, unfortunately, but movie directors are busy, I am told�).

It was their group, CuresNow, which first approached Bob Klein and asked him to develop Proposition 71.

Award recipients in attendance included:

Eli and Edythe Broad, champion givers, people whose behind the scenes generosity has helped so many efforts, not stem cells alone, but whole colleges assisted by their kindness;

Dr. Keith Black, Founding CIRM Governing Board Member; Cedars-Sinai, featured on the cover of TIME magazine as one of the heroes of medicine;

Doug Wick & Lucy Fisher-yay, Hollywood! These folks with Red Wagon, a division of Sony Pictures, use their clout to help fight diabetes and other medical maladies and have done so for a good long time-I told Lucy about Connecticut (the state) being in danger of losing funding for its stem cell program, and she immediately went and told Art Torres, who told Nick Andros, who told me-communication, concern, energy.

Dr. Brian Henderson, Founding CIRM Governing Board Member; USC, Distinguished Professor of Preventive Medicine, Kenneth T. Norris Chair in Cancer Prevention.

Governor Schwarzenegger was unable to join us, but we raised a holler that surely was heard in Sacramento, thanking the Republican Governor who saw the future of medicine and helped make it happen: Arnold Schwarzenegger deserves the thanks of a nation for his dedication to the cause of cure.

Additional awardees (not in attendance) included:

Sue and Bill Gross (these folks established a foundation at UC Irvine which will surely be one of the cutting edge institutions in the world in neurologic research.

Stewart and Lynda Resnick: who have donated so much to medical research that UCLA named a hospital after them;

Michael J. Fox, whose body may shake, but his courage never will.

Nancy Reagan: her endorsement and support was enormous to the stem cell movement;

Brad Pitt: I remembered his intelligent questions to the scientists, and his willingness to do a free ad for Prop 71.

Henry Samueli: in addition to helping the CIRM be born, Mr. Samueli and wife Susan established the Center for Integrative Medicine at the University of California;

Gayle Wilson, Former California First Lady, Founding CIRM Governing Board Member: also served as catalyst for the establishment of the California State Summer School for Math and Science (COSMOS) and still serves as chair of that board.

David Baltimore, Nobel Prize Winner, Founding CIRM Governing Board Member;

Tina Nova, CEO, Genoptix; Founding CIRM Governing Board Member;

I am indebted (again!) to Melissa King for her notes on who was there�.

Also in attendance on 12/15 in LA were:

*Leadership from the CSU system, including:

Susan M. Baxter, Ph.D. Executive Director California State University
Program for Education and Research in Biotechnology

Elizabeth L. Ambos, Ph.D.
Assistant Vice Chancellor for Research Initiatives and Partnerships
California State University

*Leadership from Southern California campuses of the CSU and California Community College systems

*Principal Investigators and STUDENTS from CSU and Community College Campuses that are part of the CIRM Bridges to Stem Cell Research Program (about 30 students in all), including students from Pasadena City College, CSU Long Beach, CSU LA, Cal Poly Pomona and others.

*Leadership from USC, UCLA, City of Hope, Cedars-Sinai, Children’s Hospital LA and other institutions

*Stem cell program scientific and administrative leaders from USC, UCLA, UC Irvine, Cedars-Sinai and City of Hope

*Key political leaders including CA Secretary of State Debra Bowen and new Assembly Speaker John Perez.

And that was only a sampling of our friends in the Southern half of the State!

I would like to close with a paragraph from a letter I wrote to one of our sisters in struggle – Rayilyn Lee, Ray of Arizona! She is tough as nails, and keeps on keeping on, despite advance of Parkinson’s. Ray can no longer speak, nor write with her hands, but she can work the computer, and argue with enemies of the research, and she will not be denied.

I hope she will not be too embarrassed if I say what I wrote to her in a personal letter:

Dear Rayilyn Lee:

Remember, you are making a difference. You help me remember why we fight. Thanks for being there, in the tough times. Generations yet unborn will benefit. They will never know our names, but there will be a path out of their suffering, and we will have made it possible.”

We will prevail.

“And as Tiny Tim, who did not die, observed: “God bless us, every one!”-Charles Dickens, a Christmas Carol.

Merry Christmas, everybody.

Next year will be great.

Comment: It is very touching to know that both Parkinson’s patients and healthy volunteers can come together to initiate a major change in the health care system of a country. If we can do the same thing in every country in the world, the Parkinson’s community will have a better tomorrow.