Saturday 30th August 2014,
The Liz Army

What would you say to the most influential people in the brain tumor community?

Liz September 16, 2013 Brain Tumor Advocacy, Surviving 18 Comments
Community Leadership award

If you had 5-7 minutes to talk in front of some of the most influential people in the brain tumor community, what would you say?

On October 3 I am receiving the Community Leadership award from the National Brain Tumor Society. I am accepting this award at the NBTS Annual Summit in Boston, MA, and have the opportunity to talk to a room full of brain tumor researchers and NBTS major donors. If you’ve seen my TEDx Talk, you know I have no problem speaking to crowds about brain cancer. But I don’t need to tell this audience about what it is like to have brain cancer.

I am struggling with what I should say. I don’t want to preach to the choir. They already know we need more money for research. They know oral forms of chemotherapy aren’t equally covered by all health insurers. They know there are more than 120 different kinds of brain tumors and that brain cancer is the #2 cancer in children.

What would you say?

Tell me your ideas in the comments section. I want to crowdsource your ideas and tell our story to this important audience on October 3.

If a combination of your ideas and my ideas turn out to be brilliant, I will post the speech in the next few weeks. But that is only if we can be brilliant together.

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  • Dain_Bramaged

    You should ask them to talk to the Susan G Komen foundation and find out how to promote our cancer so that it is well known as Breast Cancer. Brain cancer I am sure has a higher death rate than that of Breast Cancer and they (Breast Cancer) receives like 1000X the amount of research dollars that our cancer does.

    • http://thelizarmy.com/ Liz

      Fair enough! I am a big fan of partnerships.

      Just keep in mind that Komen has tons of survivors to tap into to work on advocacy. There are not enough brain tumor survivors to match the breast cancer community in numbers. And the few survivors we do have are not always in shape to go around wearing pink ribbons, er, grey ribbons and fight for research dollars.

      It’s a numbers problem in my mind.

  • Kate Dee

    Urge them to reach out more to survivors and their caregivers for detailed information on lifestyle, diet, family history, alternative therapies tried in conjunction with traditional ones. My dad passed away in ’00 of a stage 4 GBM and my husband is now a 5 year survivor of a stage 3 Glioma and off all chemo after taking non traditional doses for 4 years. I’d think they’d want as much info as possible for further research. Don’t know if you remember us Liz. We met last year at Head to the Hill. Unfortunately, we couldn’t make it this year. Congrats on the award!

    • http://thelizarmy.com/ Liz

      Hello again, and congrats to you and your husband on continued survival!

      And as for reaching out on details surrounding your survival… heck yes! That totally make sense!

  • Kate Dee

    I also wonder why after my repeated questioning of the fact, not one Dr. has had an interest in researching more genetic components with questions about my children. They now have adult brain cancer on both sides of their family, my father and my husband. I know that can’t be very common and would think they would want to know more about that and whether or not that makes my children (both boys) more at risk for developing some type of brain cancer in the future. That’s a biggie for me personally.

    • http://thelizarmy.com/ Liz

      Perhaps you can contact Gliogene and see if your boys can enroll in their study.
      http://www.gliogene.org

      They usually are looking for two people genetically related with brain tumors.

    • Glenn

      First let me congrats your on your award. My father died from glio, and I “inherited” mine Feb. Was told non heredity. (Sp)
      Currently in db trial. NGU

  • Cangela

    I wonder if you could ask them if they could advocate for medical/nursing programs to add more education about early warning signs of brain tumors. I believe that sooner intervention in some people would help immensely. Sadly, not enough of the medical community seems to be aware of what some of these issues look like and it seems to be too late for some by the time they get an accurate diagnosis.

  • Teresa Chapman

    I would want to know what they believe is the future for brain cancer treatment. My five year old son had his tumor partially resected in April, and we are living month to month with MRI’s to see if it is going to have new growth, at which point we will treat it with chemotherapy or radiation ( depending on his age). I want to start supporting a cure, and am very interested to hear new and promising avenues of treatment besides traditional chemo and radiation. I want people to start thinking outside the box, I don’t want my son living five years to be a positive statistic, I want him living fifty years to be a positive one!

    • http://thelizarmy.com/ Liz

      In your mind, what does “supporting a cure” look like?

      • Teresa Chapman

        We are still embracing our new role as a member of the brain cancer community, and I would be lying if I didn’t say we feel a bit lost. We are very private people but feel a strong desire to be a local driving force for research as well as building awareness and therefore funds for brain cancer. What that “looks like”, I’m not real sure yet because I still feel like we are trying to find where we fit in this unfortunately large ‘family’ we now belong to. Currently, we are volunteers for the The Cure Starts Now foundation.

  • John (hav77)

    I think they know the statistics of brain cancer in general. So you might want to put a more human side to it and tell them your story and how you came to receive this award.

  • nancy

    Liz, its just wrong in this day and age that those struck with GBM and other stages of brain cancer have almost no meaningful treatment. One new FDA drug in 25 years?! Seriously?? It can strike anyone…not just an old person’s disease. The brain is so tricky….there needs to be more money funneled to research. No hope is wrong….just wrong. I don’t know whether the approach taken by Stand Up to Cancer might be more effective; where a team of the best is put together….where they are not competing for funds…where a collaborative approach with views from different angles might spark innovative ideas. As I work hard to raise money to fund research, finding the best place to donate it is so difficult. There are so many places….so many different projects….so many different directions….there should be some group looking at this and trying to focus in, or laying out a plan of attack….a “BRAIN TRUST” of sorts. Everything just seems so random. I am not up on this like I should be, want to be, but a brain cancer collaborative seems to be in order.

  • Ron r

    Ron Richards I agree with 2 of the points in earlier posts as very important to raise: (1) need more awareness to help diagnose br. tumors sooner — before they’re inoperable. When is a “headache” not just a “headache?”; and (2) need some guidance or organization. as to which of the seemingly endless number of “cancer research or awareness” nonprofits to support (i.e., give $$ to) to more effectively further the bran tumor cause. There are many, many organizations out there that purport to say they are helping cancer research. not clear to me which entity is best to donate to.

  • Al Musella

    I would push to get access to unapproved treatments. There are a few new ways to get access to drugs before the traditional approval process, but no brain tumor treatments have ever taken up the FDA on the offer. There are a few candidates, such as the vaccines, which show good results in the early trials, with no serious side effects.
    As to the comment about only 1 new treatment in 25 years, that isn’t true – there were 4 FDA approvals of GBM treatments in the last 25 years: Temodar, Gliadel, Avastin, and the Novocure TTF system and 2 FDA “clearances” – for the visualzse laser system and the gliasite radiation therapy system.
    As to which organizations to support, yes it is confusing, but many of us (I run one) do amazing things, We are trying to get organized via the grey ribbon crusade – a collaboration of over 100 brain tumor foundations.. but it is slow going. You can evaluate organizations by looking at their websites. Look for the types of research projects they support, There is a wide range of philosophies on what kind of projects should be supported. Check the history of projects supported 5-10 years ago and see if they made an impact. See what services they offer patients. Talk to researchers and see how they feel about various foundations. Ask what % of your donation will go to research (or patient services if you prefer), and how quickly.

    • Al Musella

      I forgot to mention Gliagen as another candidate. It is a dye that helps surgeons remove more of the tumor. It has been standard of care in Europe for years, is perfectly safe. FDA won’t approve it here without another trial.

  • AlexisT

    I was lucky enough to hear your speech last night (congratulations on the award, as well). The speech was wonderful and I hope you post it to your blog so that everyone can read it – though I do think that something may be lost by not having your delivery.

    Your story certainly is inspiring. I had my first tumor about 4.5 years ago, did the surgery, the proton beam radiation, and everything else, all the while thinking “okay, this is a one a done deal. I had a great result and it makes for a great story. Other people should have a great result too, so I’ll be sure to do the brain tumor walk every year and fundraise.” It took another tumor just before Christmas this past year and another surgery and the year-long course of chemo that has followed for me realize/accept that brain tumors generally are not one-and-done and to get more involved with the NBTS. It was great to hear your speech and see that “lay” people have a valued place in the organization.

    • http://thelizarmy.com/ Liz

      Thank you for sharing, and for being there in person when I got to talk! And I am glad to hear you want to get more involved.

      I hear the speech was taped, so I will share it here once it is online.