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SJAS

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    Sons Alex-17 & Scott-15; two dogs

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  1. LCA CALL TO ACTION! 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: rblum@blumcapital.com Copy these UC administrators: dgresser@blumcapital.com Diane.Griffiths@ucop.edu Robert.Dynes@ucop.edu Rory.Hume@ucop.edu Steven.Beckwith@ucop.edu apadilla@orrick.com 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. Sincerely, Your Name
  2. SJAS

    Cigarette Tax

    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. SJAS

    Cigarette Tax

    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 lcaware@earthlink.net 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. Tina & Charlie, Terrific article - what a role model you two are!
  6. 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 j-neifert@earthlink.net. 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!"
  7. 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
  8. 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.
  9. Connie, I am just catching up on what has been happening to Fay these last few months and am so sad to see what she has gone through. I am so happy to hear that she is back at home. Please let her know that my heart is with her.
  10. Don & Lucie, Catching up on the news of so many old friends. Just want you to know you are in my thoughts and prayers.
  11. Teri, Just popped in quick after a long absence to check in on old friends. I am so sorry to see what you have been going through. My thoughts and prayers are with you and your family, and hope the next time I check back you'll be home with your family.
  12. Peggy, I have not been on the board in months, but I think of you often. I am encouraged to see how well you are doing. Even though I am not around much, you will be in my thoughts.
  13. 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 lcaware@earthlink.net.
  14. 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.
  15. 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. http://www.lungcanceraware.org/proc.htm
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