From Wounded to Warrior

Friends and Family,

Genevieve and I just got back from a two-for one trip to Washington, DC. The second part of the trip, the LUNGevity HOPE Summit, is a lung cancer conference. What gives me the biggest buzz at this conference are the people I meet.

I met one woman three years ago, just  months after she was diagnosed. Laura looked so terrified and vulnerable that I just wanted to put my arm around her and tell her everything would be alright. But that would not have been real. The best I could do was tell her my story, and to let her see by example that at least some people are still alive nine years later.

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Fast-forward three years, and Genevieve and I were planning to attend a rally on Capitol Hill and do some lobbying before this year’s HOPE Summit. Laura recently had to quit her full-time job, but still has enough in the tank to put her background as an attorney to organize rallies and lobbying (on Facebook: Life and Breath – LAB). On a training video conference call she led, Laura’s two bouncy little kids, maybe five and seven years old, kept running into the room, jumping up and down in front of the camera. Laura was passionately describing the best practices for lobbying, pausing every now and then to shoo her kids out of the room. I scrolled through the video screens of the 40 other participants, and they were all trying not to snicker, just like us. Laura would get a little further through the agenda, and then another kid would pop in and photobomb. While embarrassing for mom, it was hilarious for the rest of us.

Once we got to the rally, Laura stood in front of the 200+ protesters, whipping the crowd into a frenzy of moral outrage over how lung cancer kills more people than the next three leading cancers (yes, this includes breast cancer) combined, yet the National Institutes for Health give only 6% of their cancer research dollars to lung cancer research. She had us screaming so loud that the other groups in the area, a block or more away, all turned to see what the fuss was about. Way to go, Laura! In three years, you have gone from wounded bird to cancer warrior!

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But there’s more to the story. In the afternoon, we all scattered to lobby our respective elected representatives.  Genevieve, our friend Violet and I were just finishing our day of lobbying, when we ran into Laura on the street. She was fighting mad about the professional lung cancer advocacy organizations that they had coordinated with. “I told them that what they were pushing was really lame. They’re asking for one more ridiculous study that will be put on a shelf and never looked at again, and a few million dollars. That’s NOTHING to Congress. That’ not even a ROUNDING ERROR to them. I told them that’s not good enough. I’m going to be dead before my kids get out of elementary school, so your pace doesn’t work for me. It’s not about you. It’s about me!” 

I saw the tears in her eyes, along with the fire. I felt deeply for her, and for her husband standing next to us, and for those two cute little curtain-climbers that will have to learn the meaning of cancer way too soon. And I realized that, as much as I will fight it, the chances are good that what she is saying is true for me as well. If this is the pace of increase for research spending, it won’t be in time for Laura or for me.

And while Laura is right, that this funding request is completely dwarfed by the needs, it still brings crucial dollars to lung cancer research for those that follow. There have been seventeen new drugs approved for lung cancer treatment in the last three years alone. That is an explosion! There is reason for hope, which is why Genevieve and I will be back in DC in July, lobbying Congress again. That is why I am asking you to join my team for the Portland Lung Love Run/Walk on Saturday, June 23rd, or to donate to our team (Live Lung and Prosper), by following this link: https://bit.ly/2I898kl.

I thought about how Laura looked that first time I met her three years ago. And then I thought about the elected representatives Laura was about to meet. This time, I thought, it’s not going to be Laura that looks like a deer in the headlights.

Love,

Dann

What to Do on a Beautiful June Day

The Lung Love Run Walk Portland is coming up again, and I’m excited! Join us on Saturday, June 23rd, for the walk. Our goal this year is to have 30 team members, and to raise $2,500 for the Lung Cancer Alliance.

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As you are aware, I am passionate about this cause. I am still alive twelve years after I was first diagnosed with lung cancer, and that has only been possible because of lung cancer research. I have been on three treatments that didn’t even exist the first time I was diagnosed, something that is not possible without lung cancer research. But there are still huge holes in the options available. I have lost friends to this deadly disease, and the next treatment needed to keep me alive may not have been invented yet. We need the research funds now.

Next Thursday, Genevieve and I will be going to Washington, DC for a lung cancer rally on Capitol Hill to raise awareness of the 433 people a day who die of lung cancer. That afternoon, we will have private appointments with Senator Ron Wyden, Senator Jeff Merkley’s staff, and Representative Suzanne Bonamici, where we will be pressing for lung cancer research funding. I was stunned to learn that the National Institutes of Health only spend 6% of their research dollars on lung cancer. Since lung cancer kills more people than the next three cancers(breast, ovarian, and prostate) combined, that is unconscionable.

We borrowed our agenda from the Lung Cancer Alliance, and will return in July with that group for an organized lobbying trip to press the agenda again. I lobbied with this group two years ago, and it was an empowering experience, having influence on our government.  

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So if you would like to join us on a beautiful June morning, under the shade of the trees in gorgeous Laurelhurst park, click here, and join team Live Lung and Prosper.

If you would like to donate, click here.

And, even better, if you would like to form your own team, click here. The best way to grow an event like this is to grow the number of teams.

Thank you for your ongoing support in a million different ways.

Love,

Dann

LUNGevity HOPE Summit

I'm going to Washington!

Every year LUNGevity holds a HOPE Summit in Washington, D.C. This year it is on May 1st to May 3rd, and I'm going.

I learned about the conference last year, but didn't want to go. Just like Groucho Marx once said,  "I wouldn't belong to any club that will accept me as a member."

I thought that getting a couple of hundred people with lung cancer together in one place could lead to all kinds of negativity, despite the name of the conference. So I didn't go.

HOWEVER. Over the past year I have gotten a different view. I've looked at it with much more, well, hope after more contact with a number of bloggers, people in online open forums, and people who have commented on my blog. The view from here is looking pretty positive. Maybe it actually COULD be a Summit of Hope.

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Craig https://craigblower.wordpress.com/ told me that LUNGevity was providing scholarships, including travel, accommodations in a fancy schmancy hotel, and a couple of meals a day to first-time conference attendees who simply apply. So I did, and, surprisingly, it was that easy. Free. No catches. 

If you're interested, go to http://lungevity.org/ and click on the Events tab. This is a great site for a lot of reasons, and this conference is just one of them. Look around while you're there.

I'm going to find out who actually pays for these scholarships. I have one more reason for gratitude, and I'd like to thank the benefactor.