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Thread: HELP NEEDED! CA Stem Cell Act Threatened

  1. #1

    HELP NEEDED! CA Stem Cell Act Threatened

    California Senate Bill 1565 is another attack on California's Prop. 71 - The $3 billion Stem Cell Research for Cures Act. Don Reed has written a call to action (see below) to save our program from additional government control.

    If you can attend the committee meeting in Sacramento, please do. Don met with committee members Friday and reports that most members are not aware that there is any opposition. We must send a loud message that patients and their families and friends are vehemently opposed to SB 1565. Below are e-mail addresses. You may cut & paste them and send them all on one email as blind copies. Address as "Dear Assembly Member," One sentence stating your opposition to SB 1565 should take less than two minutes. A one sentence message is provided below.

    We worked so hard for the passage of Prop. 71. We waited for the lawsuits to be dismissed and we are now seeing amazing research being funded (http://www.cirm.ca.gov/) Join us. It will take a massive email drive to defeat this bill. Two minutes of your time, times CareCure Community readers, is what is needed.

    Thank you,

    Karen Miner


    Reply To:
    To:
    CC:
    BCC: Assemblymember.dymally@assembly.ca.gov,
    Assemblymember.nakanishi@assembly.ca.gov,
    Assemblymember.berg@assembly.ca.gov,
    Assemblymember.Carter@assembly.ca.gov,
    Assemblymember.DeLaTorre@assembly.ca.gov,
    Assemblymember.deLeon@assembly.ca.gov,
    Assemblymember.emmerson@assembly.ca.gov,
    Assemblymember.Gaines@assembly.ca.gov,
    Assemblymember.hancock@assembly.ca.gov,
    Assemblymember.Hayashi@assembly.ca.gov,
    Assemblymember.Hernandez@assembly.ca.gov,
    Assemblymember.huff@assembly.ca.gov,
    Assemblywoman.lieber@assembly.ca.gov,
    Assemblymember.Ma@assembly.ca.gov,
    Assemblymember.Salas@assembly.ca.gov,
    Assemblymember.strickland@assembly.ca.gov,
    Assemblymember.jones@assembly.ca.gov,
    Assemblymember.tran@assembly.ca.gov,
    Assemblymember.Adams@assembly.ca.gov,
    Assemblymember.Evans@assembly.ca.gov,
    Assemblymember.Feuer@assembly.ca.gov,
    Assemblymember.keene@assembly.ca.gov,
    Assemblymember.Krekorian@assembly.ca.gov,
    Assemblymember.laird@assembly.ca.gov,
    Assemblymember.levine@assembly.ca.gov,
    ----------------------------------------------------------------------
    Folks, your help is needed.

    Tuesday, June 17, there will be a Sacramento hearing on a bill which would (once again) attempt to hamstring the operations of the California stem cell program.

    Proposition 71 is under attack—again! Tuesday is a crucial hearing to protect Prop 71, our wonderful stem cell program, and today is Friday.

    Can you come to Sacramento that day? If so, drop me an email (stemcellbattles@aol.com)

    Before then, there is work to be done. Today, in about half an hour, I will be on the road to Sacramento to visit the offices of the members of the Health Assembly Committee.

    They don’t know I’m coming, and it will be like, “Oh, you don’t have an appointment? No? Oh, well, the person you should really talk to Susan______, but she is in a meeting, could you come back in 2 hours and 37 minutes?” Which I will say of course, write the time down, say thank you very much, and go on to the next of the 26 offices…

    No matter what state you live in, the California stem cell research program is for you.

    But the hearing is the crucial thing. If our side is not represented, we will lose. So far the patient advocate side basically has not been heard. I have been there babbling at all four hearings, but nobody else, and the bill has not received a single no vote.

    You personally can help. Doing nothing, hoping someone else will show up, is the way to lose. If you are in driving distance of Sacramento, please consider joining me at the hearing. I do not have the hour or the room number, but will know them soon.

    If you cannot come yourself, could you send an email?

    Consider sending an email (the same one) to each member of the committee.

    One sentence is all that is really needed, and you do not have to live in their district.

    It could be short: “As a supporter of stem cell research, I urge your NO vote on Senate Bill 1565. “

    Or long as you want.

    Here is the letter I sent:

    NAME, ADDRESS AND PHONE NUMBER

    As the father of a paralyzed young man, and the sponsor of a successful California law supporting spinal cord injury research*, I strongly oppose SB 1565 (Kuehl/Runner), a bill with many hidden threats.

    Three reasons leap to mind:

    1. SB 1565 would require the Little Hoover Commission to investigate the California Institute for Regenerative Medicine (CIRM)—for a fourth time. The California stem cell program has already been investigated (and found squeaky clean) three times. Further dissection is not only a waste of taxpayer dollars, but also a distraction from duty on an already short-handed CIRM staff.

    2. By mandating a one-size-fits-all approach to affordable access for uninsured Californians, (a goal we all share) SB 1565 would deny bargaining ability to the CIRM. This could defeat the CIRM’s ability to negotiate with corporations. For instance, diseases like Spinal Muscle Atrophy (SMA) devastate lives of infants and their families, but the number of patients is not a large enough market to attract corporate investment. If CIRM retains its bargaining ability, (which SB 1565 threatens) it could offer flexibility in pricing on one area, in exchange for industry involvement in an “orphan disease” like SMA, thus potentially saving lives and advancing science for the good of all.

    3. Co-author Senator George Runner, who has been described as “virulently anti-embryonic” in terms of stem cell research, reportedly seeks a new change in SB 1565. Senator Runner wishes to increase funding for the more conservatively-favored “adult” stem cell research, the type approved (and preferentially funded) by the Bush Administration. To backpedal now would be to deny the will of the California voters.

    While doubtless begun with the best intentions, SB 1565 would be a frustrating obstacle to the California stem cell program, and all who support research for cure.

    On behalf of millions who suffer chronic disease and disability, and who look to embryonic stem cell research for hope, I urge your strong opposition to SB 1565.

    Sincerely,

    Don C. Reed


    California’s Roman Reed Spinal Cord Injury Research Act of 1999, named after my paralyzed son, provided funding for a paralysis treatment developed by Geron, which is currently under discussion by the FDA, and we hope it will soon go to human trials.


    Okay, that was my letter. Yours does not have to be so elaborate. A sentence or two is fine.

    Below are the email addresses. The bill itself is the very bottom of the page,

    Thanks, and I hope to see you at the hearing, June 17th!

    Best,

    Don

    Assembly Health Committee

    Mervyn M. Dymally - Chair

    Alan Nakanishi - Vice Chair
    Patty Berg
    Wilmer Amina Carter
    Hector De La Torre
    Kevin de Leon
    Bill Emmerson
    Ted Gaines
    Loni Hancock
    Mary Hayashi
    Edward P. Hernandez
    Bob Huff
    Dave Jones
    Sally J. Lieber
    Fiona Ma
    Mary Salas
    Audra Strickland
    Dave Jones - Chair
    Van Tran - Vice Chair
    Anthony Adams
    Noreen Evans
    Mike Feuer
    Rick Keene
    Paul Krekorian
    Jim Laird
    Lloyd E. Levine
    Sally J. Lieber

    Here is the full text of the bill. www.stemcellbattles.com
    Last edited by Karen M; 06-16-2008 at 12:40 AM.
    Karen M
    C 3/4 inc. central cord
    10/29/1992 - 18 years, but who counts?

  2. #2
    Senior Member EAK's Avatar
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    Some of those email addresses are wrong Karen.

  3. #3
    EAK
    You are right. There are two assembly members that have discontinued their direct email addresses. Their websites are the only way to send email.
    For those that hate this SCI curse and believe that there is a future for new therapies and cures with esc research as much as I do, copy and paste your message on these two websites.
    http://democrats.assembly.ca.gov/members/a45/ KEVIN DE LEÓN

    Dymally@assembly.ca.gov <------- discontinued. http://democrats.assembly.ca.gov/mem...committees.htm new website contact page.

    Many thanks. : ]
    Karen M
    C 3/4 inc. central cord
    10/29/1992 - 18 years, but who counts?

  4. #4
    Thanks for the addresses.

    I just sent out individual emails to all of them. Everyone should follow suit. Open up a word window, draft a short letter, and copy and paste. There is absolutely no reason we should bitch-up and not react to this ridiculousness. If we don't at least protest, we have no right to come to this website in the middle of the night and complain about how this is taking so long.

    You are being slow-pitched an underhand softball...blast it out of the park. Do not take this lying down.
    No one ever became unsuccessful by helping others out

  5. #5
    Although I'm far away in France, I've sent emails to all assembly members from my mac.com address (who's to know I'm not californian!).
    Anyone reading Karen's urgent request, don't delay in adding your voice too.

  6. #6
    Thank you, Tufelhunden and Carbar. : ]


    It does not matter that you are not from California. Let the legislators see that this issue is a world wide issue. There is no other state or country that has a $3 billion fund for hesc research. We cannot let it be directed by politicians. Show your address, please. We can do this. It is a pretty easy way to make a difference.
    Karen M
    C 3/4 inc. central cord
    10/29/1992 - 18 years, but who counts?

  7. #7
    Senior Member
    Join Date
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    Location
    minnesota
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    I emailed all but three. Those websites would not let me post because I live in Minnesota. Good luck with this fight. Keep us posted.

  8. #8
    Quote Originally Posted by Karen M
    Thank you, Tufelhunden and Carbar. : ]


    It does not matter that you are not from California. Let the legislators see that this issue is a world wide issue. There is no other state or country that has a $3 billion fund for hesc research. We cannot let it be directed by politicians. Show your address, please. We can do this. It is a pretty easy way to make a difference.


    Karen, I sent another set of emails from Stepnow too.

  9. #9
    Senior Member Leo's Avatar
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    done

    thanks karen
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  10. #10
    Thanks! Tomorrow Don & I will be at the committee meeting. I hope that we see others there. I will report back. : ]
    Karen M
    C 3/4 inc. central cord
    10/29/1992 - 18 years, but who counts?

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