from Chew Nee Kong  "NK"

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
[log in to unmask]


From: chew nee kong 
Sent: Monday, January 04, 2010 5:12 AM
To: don reed ; rayilyn brown ; diane wyshak 
Subject: RE: Please share


Dear Don

We have a big problem in Malaysia. Parkinson's is not regarded an important illness. Research work is almost zero.

I was actually very happy to read to your article, and I was particularly touched when I saw Michael J Fox with Oprah Winfrey in youtube yesterday. In your country, so many people have lobbied for the Parkinson's research and increased the awareness of Parkinson's. So many people from various backgrounds can come together and change the health policy - we can make life better for those who suffer from Parkinson's.

I wished the same thing can happen in Malaysia.

I have asked my colleague to sent a letter to Michael J Fox to request for a video-recorded message for Malaysian Parkinson's community. He is a great man - he exposed his illness and overcame the social stigma for the sake of the Parkinson's community. Many Parkinson's patients would not do this. 

I have always believed that it is the Parkinson's patients who should fight for their rights.

Dr Chew.  


--------------------------------------------------------------------------------
From: [log in to unmask]
To: [log in to unmask]
Subject: Re: Please share
Date: Mon, 4 Jan 2010 03:07:05 -0800


My pleasure! Sometime when you get a chance, I would love to know about the research situation in Malaysia?
  ----- Original Message ----- 
  From: chew nee kong 
  To: don reed 
  Sent: Monday, January 04, 2010 1:47 AM
  Subject: RE: Please share


  Dear Don

  Thanks for giving me the permission to use your article. I have just corrected some typing errors and did not change the contents. I have sent it to my website manager.

  I believe that the Parkinson's community in various countries can benefit from sharing info and experience.

  Thanks again for the wonderful article.

  Dr Chew  


------------------------------------------------------------------------------
  From: [log in to unmask]
  To: [log in to unmask]
  Subject: Re: Please share
  Date: Fri, 25 Dec 2009 01:04:40 -0800


  of course! Anything I write for the stem cell community is free to share. Merry Christmas!
    ----- Original Message ----- 
    From: chew nee kong 
    To: diane wyshak ; [log in to unmask] ; rayilyn brown ; don reed 
    Sent: Thursday, December 24, 2009 7:25 PM
    Subject: RE: Please share


    Dear Don

    That's a very nice article. It is very touching. 

    The Parkinson's "fighters" in your country have done very well. 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. I am happy to know that 2010 will be a better year for the Parkinson's community in your country.

    Can I have your permission to publish this letter of yours in the Malaysian Parkinson's website (www.lloydtan-trust.com)? This letter will serve as an encouragement to the Parkinson's community in Malaysia.  

    Thanks.

    Dr Chew.


----------------------------------------------------------------------------
    From: [log in to unmask]
    To: [log in to unmask]; [log in to unmask]; [log in to unmask]
    Subject: Fw: Please share
    Date: Thu, 24 Dec 2009 19:12:24 -0500



    ----- Original Message ----- 
    From: Don C. Reed 
    To: Diane Wyshak 
    Sent: Thursday, December 24, 2009 3:58 PM
    Subject: Please share



      
    CHRISTMAS EVE  IN THE STEM CELL WORLD: December 24, 2009



    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 [log in to unmask]   



    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 hescr 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 pluripont, 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! 



    DISEASE TEAM PRESENTATIONS BY TEAM LEADS INCLUDING: (for more, see bottom of page)


    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) INCLUDE: 


     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.





    Approved Disease Team projects: (taken from CIRM webpage)
    (See the Disease Team media materials for more information about the funded teams.) 

          Grant number
         Investigator
         Institution
         Intl. Collaborator
         Total CIRM Funding
         
          DR1-01421
         Karen Aboody
         City of Hope National Medical Center
         
         $18,015,429
         
          Co-PIs:

          Jana Portnow
         City of Hope National Medical Center
         
         
          Larry Couture
         City of Hope National Medical Center
         
         
          The group proposes to treat brain tumors using neural stem cells that are genetically modified to carry a tumor-killing drug.
         
          DR1-01423 
         Emmanuel Baetge
         Novocell, Inc
         
         $19,999,937
         
          Co-PI:

          Jeffrey Bluestone
         University of California, San Francisco
         
         
          The group proposes to treat people with type 1 diabetes by implanting insulin-producing cells generated from human embryonic stem cells.
         
          DR1-01426 
         Mitchel Berger
         University of California, San Francisco
         
         $19,162,435
         
          Co-PIs:

          Webster Cavenee
         Ludwig Institute for Cancer Research
         
         
          Evan Snyder
         Burnham Institute for Medical Research
         
         
          The group proposes to treat brain tumors using neural stem cells that are genetically modified to carry a tumor-killing drug.
         
          DR1-01430 
         Dennis Carson
         University of California, San Diego
         Canada
         $19,999,826
         
          Co-PI:

          Catriona Jamieson
         University of California, San Diego
         
         
          International Partner:

          John Dick
         University Health Network
         
         
          The group intends to develop six drugs – three monoclonal antibodies and three small molecules – to destroy leukemia stem cells.
         
          DR1-01431 
         Irvin Chen
         University of California, Los Angeles
         
         $19,999,580
         
          Co-PI:

          Geoff Symonds
         Calimmune, Inc
         
         
          This group proposes to treat HIV/AIDS using an RNA interference approach to modify the patient’s blood-forming stem celis. When transplanted back, those cells will produce T cells that are resistant to HIV infection.
         
          DR1-01444 
         Mark Humayun
         University of Southern California
         MRC
         $15,904,916
         
          Co-PIs:

          David Hinton
         University of Southern California
         
         
          Dennis Clegg
         University of California, Santa Barbara
         
         
          International Partner:

          Peter Coffey
         University College London-Institute of Ophthalmology
         
         
          The group intends to treat macular degeneration using transplant retinal cells derived from human embryonic stem cells.
         
          DR1-01452 
         Donald Kohn
         University of California, Los Angeles
         
         $9,212,365
         
          Co-PIs:

          Thomas Coates
         Children’s Hospital of Los Angeles
         
         
          Victor Marder
         University of California, Los Angeles
         
         
          The group proposes to treat sickle cells disease using a gene therapy approach to modify the patient’s blood-forming stem cell so that they produce normal red blood cells.
         
          DR1-01454 
         Alfred Lane
         Stanford University
         
         $11,709,574
         
          Co-PIs:

          Anthony Oro
         Stanford University
         
         
          Marius Wernig
         Stanford University
         
         
          The group proposes to treat the skin disease epidermolysis bullosa using genetically modified iPS cells created from the patient’s own skin cells.
         
          DR1-01461 
         Eduardo Marban
         Cedars-Sinai Medical Center
         
         $5,560,232
         
          The group intends to repair heart tissue damaged by heart attack using stem cells taken from the patient’s own heart.
         
          DR1-01471 
         Samuel Pfaff
         The Salk Institute for Biological Studies
         
         $15,644,881
         
          Co-PIs:

          Lawrence Goldstein
         University of California, San Diego
         
         
          Don Cleveland
         Ludwig Institute for Cancer Research
         
         
          The group intends to treat people with Amyotrophic lateral sclerosis by implanting precursor astrocyte cells derived from human embryonic stem cells.
         
          DR1-01477 
         Dennis Slamon
         University of California, Los Angeles
         Canada
         $19,979,660
         
          Co-PIs:

          Garry Nolan
         Stanford University
         
         
          Michael Press
         University of Southern California
         
         
          International Partner:

          Tak Wah Mak
         University Health Network
         
         
          The group proposes to develop drugs that destroy the cancer stem cells in solid tumors.
         
          DR1-01480 
         Gary Steinberg
         Stanford University
         
         $20,000,000
         
          Co-PI:

          Stanley Carmichael
         University of California, Los Angeles
         
         
          The group intends to treat stroke using implanted neural stem cells derived from human embryonic stem cells.
         
          DR1-01485 
         Irving Weissman
         Stanford University
         MRC
         $19,999,996
         
          Co-PIs:

          Ravindra Majeti
         Stanford University
         
         
          Beverly Mitchell
         Stanford University
         
         
          International Partner:

          Paresh Vyas
         Weatherall Institute of Molecular Medicine, Oxford University
         
         
          The group intends to generate a monoclonal antibody that destroys leukemia stem cells.
         
          DR1-01490 
         John Zaia
         City of Hope National Medical Center
         
         $14,583,187
         
          Co-PIs:

          Paula Cannon
         University of Southern California
         
         
          David DiGiusto
         Beckman Research Institute of City of Hope
         
         
          This group proposes to treat HIV/AiDS using a gene therapy approach to modify the patient’s blood-forming stem celis. When transplanted back, those cells will produce T cells that are resistant to HIV infection.
         
          Total funding
         $229,772,018
         





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