October 20, 2009

How Smart Is Your Favorite Organization?

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Bigger isn’t always better.  More isn’t always better.  Louder, snazzier, cuter, more prolific isn’t always better.  But I think smarter IS always better.

I was recently asked how I decide what organizations I donate to.  A few years back the head of the American Cancer Society blew me away.  He said increased access to health insurance could reduce cancer mortality rates just as much as scientific discoveries.  Who cares if we find cures that nobody can afford?  Hundreds of thousands of Americans die because they cannot afford proven cancer treatments. This doesn’t take complex microbiology to fix. All we need are better public policies.

I’m only donating to organizations providing education and action in support of the public option.  Surprisingly, no cancer organization is doing this work in a serious manner.  So I’m donating time and money to orgs supporting real healthcare reform like Campaign For Better Health Care, and Health Care for America Now.  Moral: Don’t just donate, donate smartly.

On Monday’s Stupid Cancer Show, we interviewed Diana Balma, Executive Director of Stand Up to Cancer.  These folks aren’t just dishing out cancer research grants the way most foundations do.  Rather than encouraging competition between scientists working in separate labs, who don’t share critical information, SU2C is creating and funding dream teams of scientists who collaborate.

Throwing $73 million at cancer research doesn’t impress me.  But giving $73 million to cancer research in a way that changes the model for how research is conducted – that’s very impressive.  Moral: Don’t just do research, do research smartly.

Yesterday I learned Planet Cancer (a young adult cancer organization) is merging with the Lance Armstrong Foundation.  Many organizations duplicate services, raise money but don’t prioritize their budgets, promote their name but have no useful programming, or are working in a vacuum.  Why?  People’s egos and desire to do good sometimes gets in the way of what is useful.  Not Planet Cancer.

Combining the clout and resources of the Lance Armstrong Foundation with Planet Cancer’s know-how in serving young adults is a super smart move.  Moral: Don’t just run an organization, run an organization smartly.

Who do you donate to and why? What are some of the smartest projects in the cancer community? Do you agree that smarter is better?

Read the Making A Difference section of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more smarts about making change.

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Comment(s)

  1. charissa Says:
    October 21st, 2009 at 7:53 AM

    This is super interesting stuff. Being the founder of a new, small, pittsburgh based org I think about these things a lot. I have crazy dreams of sitting down with Mario Lemieux to talk about how what Im doing should be a part of what he’s doing with his foundation. Maybe some day! For now, I/we have to work really hard to do good and prove theres a need for more services for young adults in the region. Thinking about partnerships and best use of resources is always in my thoughts though, for sure.


  2. Sarah Wenstrand Says:
    October 21st, 2009 at 1:34 PM

    Wonderful topic to give A LOT of thought to, and thankfully, you do that so well, Kairol. There is much to be learned from groups of organized, thoughtful and yes, smart, people and I figured out a looooong time ago and I am much better at supporting those who already do it well than re-inventing it myself. Kudos to examination and “finding what fits” through thorough investigation for your personal donation preferences.

    Charissa, the vision of sitting down with Mario Lemieux is a wonderful one to have, I think. When Mike was diagnosed in 1995, his Army company commander didn’t know what the hell to do with a “sick soldier”. As a hockey fan, his commander immediately thought of fellow diagnosed, Mr. Lemieux, and wrote him, letting him know about Mike and ask for a letter of support for a fellow young guy with HD. That letter was an amazing boost to Mike and I still have it framed. :) I bet Mr. Lemieux has lots of wisdom, both organizational and personal, to pass on in addition to possibly putting you in contact with those he’s entrusted to run his non-profit. Convey your passion and demonstrate your follow through (citing your recent grant reception!) and I would hope he’d see a kindred local cancer awareness champion.


  3. Kate Says:
    October 21st, 2009 at 2:33 PM

    I think what Planet Cancer and LiveStrong are doing is absolutely brilliant. People have asked why I don’t start “an organization” and I tell them that I think there are too may organizations already. Can you imagine the power we could have if all of the organizations that are out there dealing with pieces and types of cancer actually worked together? It would be massive. So I just suggest groups that I respect or groups that provide something different.


  4. Kairol Rosenthal Says:
    October 22nd, 2009 at 1:29 PM

    Kate, I am not sure what I have heard more of when people hear that I have cancer: 1. I should go vegan. 2. I should start a non-profit. There are so many smart contributions that we can make to whatever facet of the cancer equation seems the most senseless to us and we can do them without starting a new organization that sucks limited time and financial resources from the small pool of cancer donors. Some ideas of what to do besides starting a non-profit org?: Have a super useful blog (like yours Kate), go to an existing non-profit and ask to run a project under then, volunteer for an existing organization, become a hospice volunteer. The list goes on and on.


  5. carolbe Says:
    October 24th, 2009 at 4:28 PM

    Right now I’m down on the American Cancer Society for taking a stand that is reported to be against screening. The newspaper may have gotten it wrong, but it sounds like they are lumping breast and prostate cancer together as those cancers that encourage removing of too many innocuous lumps. Tell me I misread this!


  6. Kairol Rosenthal Says:
    October 25th, 2009 at 12:46 PM

    Carolbe – I am glad that you brought this up. I have been following this story all week and think it is a very important one. Years of smart, well conducted scientific studies are showing that 1. Some breast cancers are extremely slow growing and less aggressive than how we are treating them and that we may be over treating many breast cancer patients with surgeries and chemo treatments that are more aggressive than what the individual prognosis merits. This is a huge problem as this over treatment has negative long term physical impacts to the patient and huge financial burden to both the patient and the healthcare system. 2. Large studies that came out in 2003 (over half-million participants)show that doing self-breast exams has made zero impact in improving the survival rates of women diagnosed with breast cancer. Most breast cancers are also not found through mammogram either. The majority of breast cancers (in women over 40) are detected in between mammography and doctor appointments and are found accidentally by the woman soaping up in the shower, by a partner touching her – that random kind of finding. For this reason, the ACS and many other larger cancer organizations have not been recommending self-breast exam for years. 3. The majority of prostate cancers are so slow growing and non-aggressive that they could go without treatment all together. What the ACS is saying, and I fully support, is that the research and messaging behind breast cancer and psa screenings needs to change. They need to start breaking down beyond staging, the different kinds of lumps being found in screenings and not treating certain cancers as aggressively as others. They also need to figure out if the negative impacts of screening and biopsy (radiation exposure and scar tissue which can impact later cancer detection) are outweighed by the benefits the screening exams and if the screening exams can be improved or altered in some way to make them more beneficial than they are now. ACS still believes that colon and cervical cancer screenings are HIGHLY effective. But the research is just not behind breast and prostate like we thought it was. I actually congratulate ACS for being flexible enough to not stick with science that doesn’t work. I think it will take years of strong messaging to teach patients what needs to be done instead because we have been really taught to believe that psa and breast cancer screenings are going to save our lives. Bottom line is science is showing they are not, so we need to figure out what else will.

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