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Posts posted by SJAS


    The Tobacco Related Disease Research Program (TRDRP) is a critical component in securing funding for lung cancer research. Established by a mandate of California voters under Proposition 99 and administered through the University of California Office of the President (UCOP), it includes lung cancer among its top research priorities. TRDRP now faces a massive reorganization which may threaten its integrity.

    In a cost-cutting move, the UCOP is proposing significant changes including centralization of the grant review process of several programs into a single entity. This threatens to dilute the expertise needed for setting up a fair and scientifically rigorous peer review process. Evaluation, planning and dissemination, all components of an ethical grant program, are also in jeopardy. It is alarming to note that the entire process of determining the new structure has taken place without any attempt to inform or solicit input from key stakeholders – including the lung cancer community.

    Grants targeted specifically at lung cancer pathogenesis, diagnosis, and treatment have received funding from the TRDRP of approximately $2 million per year. As a chronically and severely under funded and stigmatized disease, it is imperative that such resources be managed by those who understand that the approach to lung cancer be three-pronged – prevention, early detection and improved treatment.

    Take action now to put the brakes on!

    Lung Cancer Alliance calls on the UCOP to delay further action in restructuring this program until all stakeholders have been informed and given the opportunity to provide input regarding the proposed changes. Send a letter to the Chairman of the UC Regents and tell him that the lung cancer community must have a voice in this matter.

    Email Chairman Richard Blum at:

    [email protected]

    Copy these UC administrators:

    [email protected]

    [email protected]

    [email protected]

    [email protected]

    [email protected]

    [email protected]

    A sample letter is below for your use as desired:

    Richard C. Blum, Chairman

    University of California Regents

    1111 Franklin Street, 12th floor

    Oakland, CA 94607

    Dear Mr. Blum:

    Please halt the imminent proposed restructuring of the TRDRP. This massive reorganization has the potential to inflict devastating damage to the already severely under funded and inadequate lung cancer research field. The potential outcome in human suffering and lives is staggering.

    The proposed changes were designed through a process which completely excluded the knowledge and experience of key stakeholders, thus denying them any opportunity to provide input on potential impacts. As an institution renowned for its research, does that sound like good science on which to base decisions affecting life and death?

    Lung cancer is responsible for nearly one third of all cancer deaths. Even the National Cancer Institute has acknowledged its gross lack of funding given its massive public health impact. With such scarce resources, it is critical that every dollar for research be directed to projects offering the very best science. That can only be determined by authorities immersed in the lung cancer field with a thorough understanding of the three-pronged approach required to conquer this disease – prevention, early detection and improved treatment.

    We respectfully request that you instruct the UCOP to stop the reorganization until a process is implemented to ensure that all key stakeholders are informed and have an opportunity to have input on any proposed changes. In the interim, please do all within your power to see that TRDRP continues to function fully with its knowledgeable, dedicated staff.


    Your Name

  2. The new tax money has many specific places to go. The vast majority will be going to the hospital emergency room services. Then there are numerous other places. There is some money for tobacco control. I am trying to get in contact with someone who has far more experience than I with the financial stuff to figure out if there is any funding for lung cancer in the proposed state budget (due to be passed June 15). Probably unlikely. We have so very much work to do.

  3. It is so hard to just pop in once in awhile and then see that those who have been so special and struggled so hard are coming to journey's end. TAnn has been a wonderful source of inspiration and support to so many. May she and her family find comfort and peace now.

  4. Sorry to be so late in posting to this one, but I am not able to get much time on LCSC anymore - boy, do I miss all the folks here :(

    I am Co-chair of the CA Steering committee of Lung Cancer Alliance, so have been following the situation with tobacco funding closely. The entire MSA funding allotted to the state was securitized (sold as bonds) to balance the budget, meaning that money is gone. As stated earlier, most of the money for the counties has not even been used for tobacco control. My own county securitized the money to build a new jail.

    The proposed tobacco tax is a result of a combination of two initiatives originally proposed by different groups - neither of which had ANY funding for lung cancer. The new initiative is a proposed $2.6o/pack increase. It at least mentions lung cancer, but the lung cancer funding is a very small amount of the total and is combined with other lung diseases. There is specific funding for things like breast cancer and even obesity.

    We have been working with one of the partners on the initiative to at least secure 1% of the total funding for early detection and better treatment options. To get a better understanding of the initiative, you can read a Sacramento Bee article which is still posted on the Lung Cancer Aware site - http://www.lungcanceraware.org/tti.htm

    The graphs at the bottom are particulary helpful.

    If you really want to impact where this and other tobacco funding goes in California, please consider adding your name to the Lung Cancer Alliance California general membership roster. There is no financial commitment. We will keep you informed on what is happening with state funding and send out a "Call to Action" for contacting your representative when important bills are pending. You may e-mail me at [email protected] to add your name. We must show the groups who have been guiding policies regarding lung cancer that we mean business and are not going away!

  5. Thanks for the great response! Wash. DC will certainly be hearing from us.

    Here are steps you can take:

    1) Send emails (or phone calls) to both senators and your representative in the House.

    2) Contact your local media. Don't just rely on the major outlets - even local stories sometimes get picked up by the major groups. Try to get them interested in the resolutions and offer to tell your story. Please make sure they include Lung Cancer Alliance's name so that it is clear who is pushing the legislation and LCA can provide them with accurate information. Remind them that this is historic. This is the equivalent to the beginnings of the HIV/AIDS and breast cancer movements. If you would like, you can get a press release from LCA.

    3) Send an email/letter or call every family member, friend, organization you know and ask them to lend their support and pass the word on to their contacts.

    4) Ask those who might be interested in charitable donations to consider doing so for LCA. They desperately need funds for advertising, materials, etc. Remind them that while donations for research are critical, Lung Cancer Alliance's work will leverage $MILLIONS if successful.

    5) Contact LCA and ask them to send your contact information to whomever is working for LCA in your state. If you don't have an active group - start one. If you are in California, contact me at [email protected].

    As LCA President Laurie Fenton states, lung cancer is at its "tipping point." We just need to push it a bit more to reach the summit and watch it take off. As Tina says, "LET'S DO IT!"

  6. My apologies once again for being so long off the board - but I do have a good excuse :) I have been very involved with Lung Cancer Alliance and just returned from the DC conference. I wish each and every one of you could have been in the room when Senators Hagel and Clinton (then later in the day Rep. Shaw) announced their sponsorship of S.Res 408 and H.Res 739. It was overwhelming. Lung Cancer Alliance has pulled off a miracle to get this ball rolling.

    Now is the time for all of us to really roll up our sleeves and get to work. This is only a start. If we want it to succeed, we MUST rally support from every person, organization, etc. with whom we have contact. Please contact your state senators and respective representatives and ask everyone you know to do so. If you would like, you can email me and I will send you a sample letter with simple links to send email to your legislators (e-mails are preferred over "snail mail" due to security reasons).

    This is about investing a few minutes of your time to effect major changes for lung cancer.

    Lung Cancer Alliance very much needs your support. I can tell you that LCA has extremely gifted, dedicated leadership in DC - but they simply cannot do it on their own. This is an opportunity never before seen in lung cancer - please don't let it slip away.

    I can tell you how much this work has helped me deal with the anger and frustration of our lung cancer experience. This is a way to really fight back. Please join us.

    Joyce Neifert

  7. Hello to my special friends at LCSC,

    I have not been able to come to the board much since

    Steve's passing. I would like to say it is because I have been so busy (well, I HAVE been busy...),but it is just difficult for me to be here right now. I'm afraid that my adjustment has not been entirely without some pitfalls.

    I just had to check in on some of my old friends and was saddened to see that many are facing such difficult times. I want you to know that I think of you often.

    As for us, we are getting through each day. Our sons seem to be doing well. Unfortunately, Steve's elderly mother has not coped well and so I have moved her into our home. None of us had realized how much Steve had been doing to sustain his mother's indpendence. But it is a blessing to have her fill a bit of the gaping hole in our lives.

    I have not been able to do as much with our local Lung Cancer Aware group as I would like due to a heavy work schedule. However, I am very involved with the Lung Cancer Alliance CA Steering Committee. It does help me to feel like we are still fighting back.

    I send my best wishes to all and beg your forgiveness for my long absences. I continue to be deeply grateful for this website and all the marvelous people here.

  8. I have been getting some requests for information, so I thought I might offer it here because it is LCAM and people are thinking about this right now.

    I put together a packet of info for people who have been asking about starting a local Lung Cancer Aware group. Our goal is that each group will organize in whatever way they see fit. There is no financial commitment. The objective is to keep the structure simple so that it does not become unwieldy and ask so much that people drop out.

    Each group determines its projects. We are NOT a fundraising organization, but do support other lung cancer groups in their fundraising activities. A group might volunteer to help in some fundraiser with the understanding that a percentage would be used for LCSC.

    Each group works with whatever organizations they choose for specific projects or goals (eg. Lung Cancer Alliance for LCAM proclamations, our local ALA for the "Shine a Light" rally). One example might be to volunteer speakers for local groups. The whole point is to keep it as manageable as possible so as to encourage people to stay active.

    We are basically a networking mechanism to help people establish a presence and resource for lung cancer in their local area. If you want me to e-mail you the basic info packet contact me at [email protected].

  9. Thank you Ginny, Becky & Diane. I very much appreciate you taking your valuable time to do this for us.

    Yesterday was a marathon phone and computer session. The upshot is that even though the Dept. of Health Services stumbled when trying to defend the statement that the majority of lung cancers are related to ACTIVE (emphasis mine) smoking, they still stand by their proclamation and say it's not standard procedure to reissue it. Standard procedure or not, they must do better.

    Laurie Fenton has contacted Senator Dianne Feinstein (CA) who is also Co-Chair of the Senate Cancer Caucus, to express her disappointment in the proclamation and request the a hearing be held in Congress to address all the issues surrounding lung cancer.

    So thank you for helping to press this issue. It is making a difference.

  10. Things have really heated up in our fight to get the governor's office to rescind, rewrite and reissue an appropriate proclamation for LCAM. Our Chair has written a very moving letter which we have now posted on our website. If you would like to read it and also send feedback to our governor, click the link below. We want Gov. Schwarzenegger to hear an outcry from across the nation on the disservice this proclamation does to all those affected by lung cancer. As a state which prides itself on its understanding and compassion for all persons struggling with issues impacted by stigma, it is outrageous that this is the best they can do for those with lung cancer. We would appreciate your taking a few minutes to send feedback to our governor.


  11. Kathi,

    I haven't been able to come to the board much over the last few months, so I missed the post on the loss of your father. I am so sorry to hear that this wonderful man has passed away. Your stories such as this one illustrate the loving legacy of memories which he left with his family. I hope the memories of all those happy Christmas celebrations will help fill the emptiness of this year. You are in my heart and thoughts.

  12. Holly,

    I am so, so very sorry to hear about your mother. You have had to become an adult overnight and deal with something most of your friends cannot really comprehend. You're right, it is hard on our kids - my two teenage sons just lost their dad two weeks ago. But you have shown your strength and courage just by coming here and your compassion for others with your post. Your mother had to leave, but I think she knew that you are a very special young woman with the resources to go on to a wonderful future. I wish you one with much happiness to ease the pain you have endured at such an early age.

  13. A smoking tent! That is just great! Happy to know our tax dollars are being used in such a way. And he even has lung cancer in his in-law's family. Your Minnesota proclamation is so much better than ours, Connie.

    We are mounting a protest. Our Lung Cancer Aware website will soon have a copy of the protest and a link to the governor's e-mail. I would love the governor to hear that this tarnishes California's reputation across the country. Feel free to use it. Here is a press release we did before our event. We're hoping that there is enough of a response to the proclamation that we can do something to change it.


    November 4, 2005

    Contact: Joyce Neifert, Co-founder of Lung Cancer Aware, 707-481-0151


    [email protected]



    (SANTA ROSA, CA) – “SHINE A LITTLE LIGHT” ON LUNG CANCER, rally, this evening, November 4th , from 6:00-8:00 intends to bring awareness to the plight of those with lung cancer in this country. However, Governor Schwarzenegger’s recently approved proclamation declaring November – Lung Cancer Awareness Month- will add increased energy as the proclamation comes under fire for its language and the overall impression that lung cancer is simply a matter of the elimination of tobacco usage. The CA Steering Committee of the Lung Cancer Alliance (DC) which had originally submitted the request and contacted the Governor’s office on a daily basis to urge its adoption, was enraged to find the final proclamation bore no resemblance to that which they had submitted - and actually left the impression that the month was more about the addiction of tobacco than the disease of lung cancer.

    This disappointing turn of events has brought an outcry from the lung cancer community nationwide and especially in Santa Rosa where two recent deaths highlight a different side of lung cancer. Steve Neifert, Co-founder of Lung Cancer Aware, and lifelong nonsmoker, died just 11 days ago after a 26-month struggle with the disease. His death followed two days after the shocking loss of Laurianne Koning at age 25. Koning, a nonsmoker and new mother, was diagnosed two days before the birth of her son Calem, five months ago. Her sister will address the rally tonight as her father stands beside her with Laurianne’s son.

    In an e-mail to the CA Steering Committee, Chair Nancy Michener, 5.5 year Stage IV lung cancer survivor and also a nonsmoker, stated, “The good news is that Governor Schwarzenegger issued a lung cancer proclamation today…. The bad news is that three of the four paragraphs of the proclamation are all about smoking, which is exactly what we feared and full expected.” She went on to note, “The stigma is alive and well in California.”

    The Lung Cancer Alliance states that approximately 60% of newly diagnosed cases will be in former or never smokers and over 50% will be diagnosed at a very late stage.

    “This proclamation is a slap in the face for my family, the family of Laurianne Koning and every person struggling with lung cancer,” declares Steve’s wife, Joyce, also of Lung Cancer Aware. “It is an affront and an embarrassment to the state of California, especially in light of Dana Reeve’s revelation of her own struggle with the disease and the recent progress made in combating the stigma which has plagued lung cancer funding. Lung cancer is as much a societal issue as a health issue.”

    Lung Cancer Aware is a Sonoma County based organization dedicated to advocacy, support and awareness of lung cancer issues. For more information, log on to our Web site at www.lcaware.org or in the U.S. call (707) 481-0151

  14. Ginny, Katie & Nancy,

    Thank you for taking the time to respond to this one. Ginny & Katie - you have always been leaders par excellence. Katie, could you e-mail me a copy of the wording of your TX proc. at [email protected]?

    Boy, I sure wish we could change this, but I am afraid about all we can do with the actual proclamation is a symbolic burning of it on the Capitol steps. Instead, perhaps we can use it to make the general public aware of how entrenched the stigma is and create a public outcry for change.

    As painful as this is for me, it breaks my heart for the Chair of our committee, a 5.5 year Stage IV survivor who never smoked. She has worked tirelessly on this effort from the moment SHE initiated the proclamation request, only to be told that a proclamation was FINALLY going to be approved but the language was CONFIDENTIAL!

  15. I have been involved for the last few months with the Lung Cancer Alliance CA Steering Committee trying to get an LCAM proclamation from the State of CA. It has been an arduous, frustrating process with the state dragging its feet all the way.

    Today a proclamation was passed - only not the one we had fought so hard to get approved. Here are the contents of an e-mail from our committee Chair discussing the proclamation.

    The good news is that Governor Schwarzenegger issued a lung cancer proclamation today, and it has been posted on his web site! Go to: http://www.governor.ca.gov/state/govsit ... mepage.jsp Then go to press room and then go to proclamations.

    The bad news is that three of the four paragraphs of the proclamation are all about smoking which is exactly what we feared and fully expected. Nothing at all about screening, nothing at all about the majority of people diagnosed are not current smokers, nothing at all about compassion or advocacy for people living with lung cancer, nothing at all about this disease being severely underfunded given the huge numbers of people who suffer from it. Nothing at all about trying to change the way this illness is perceived by the public.

    I ask you to contrast this proclamation with one the Governor issued in October declaring Breast Cancer Awareness Month in which he talks about the "devastating medical, emotional and financial effects" for this illness and talks both about screening and treatment. Once again, lung cancer is not worthy of the same language.

    The stigma is alive and well in California.

    This proclamation is an outrage and a slap in the face for all those with lung cancer. It is particularly painful for me so close to losing Steve, a neversmoker. Please join me in spreading this information so that we can fight the negative fallout from such a proclamation. Please post it, send it to others - whatever you can think of to make sure that people know this does NOT represent lung cancer awareness.

    Thank you for your help.

  16. This Friday, Nov. 4 will be the "Shine a Little Light on Lung Cancer" rally in Santa Rosa, CA. Kay Cofrancesco of Lung Cancer Alliance(DC)will be speaking along with others affected by lung cancer. A key component will be the collection of Names - Hometowns - Ages (optional)of anyone who has dealt with or been lost to lc for a Roll Call Registry which will be taken to Sacramento, read on the Capitol Steps, taken to legislators and then forwarded to Lung Cancer Alliance who will see that it reaches the appropriate members of Congress. We will also be collecting scrapbook pages for "Faces of Lung Cancer" books.

    We are asking you to send us the names, hometowns & ages (optional) of those you would like included. Also, if you would like to submit non-returnable pictures or memorablia, or stories for a scrapbook page, you may send it to:

    Joyce Neifert

    %Jenny Bard

    American Lung Assoc.

    115 Talbot Ave.

    Santa Rosa, CA 95472

    Please help us to open the eyes of our legislators as they get to know the real toll of lung cancer.

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