One Voice Against Cancer Lobby Day in DC

mother's day saturday.  dogwood was a mother's day gift years ago.

"unity is strength.  knowledge is power.  attitude is everything" - from the livestrong manifesto

an interesting spot on the senate side of the capitol

"we believe in energy: channeled and fierce" - from the livestrong manifesto

the capitol's getting a facelift

earlier this week in washington dc, more than 100 people from 40 states gathered to participate in the One Voice Agiainst Cancer (OVAC) annual lobby day.  OVAC is a collaboration of national non-profit organizations working to deliver a unified message to Congress and the White House on the need for increased funding for cancer research.  i was there as part of the Livestrong delegation.

after nine years of participating in livestrong cycling events, i felt the need for a change and when an email landed in my inbox earlier this year asking for volunteers to join other livestrong leaders for this event, i immediately filled out the application.  having zero lobbying experience, i wasn't sure if i would get a spot, but as i've known since first finding livestrong nearly ten years ago, it really comes down to sharing your own stories and listening to those of others.  once i received word i would be going to washington i did a small amount of research into what OVAC is all about and also took a look at some websites with info about Pennsylvania's senators, and representatives from southeastern PA.

it seemed fitting that mother's day was when i hopped on amtrak out of wilmington to go ask Congress to increase funding for cancer research, screening, and prevention education.  we celebrated the day before by hanging out at mom and dad's before heading out to lunch.  my family has been there for me every step of the way and i brought happy memories from seeing them saturday for the few days in DC.

also fitting was getting to spend an evening with friends before heading off to the OVAC training monday morning.  i have amazing friends, all incredible in their own ways, and the best ones have been by my side through most of my adventure.  some new ones have been added to the mix, and they are only an improvement to the team.  it felt good to relax a bit, eat perhaps a bit too much cheese, have a big dinner, and finish things off with definitely too many cookies.  at least i had some good nutrition for the upcoming days.  they turned out to be long ones, but in a  good way.

after monday's breakfast of some yogurt with cereal and fruit - mangoes with a mixture of chili powder and sugar, so good - i gathered my stuff and headed to the metro through a quiet neighborhood.  the train i wanted wasn't running - not a surprise considering dc's recent metro woes - so i changed the itinerary and ended up running a little closer to late than i really wanted.  per Grandfather's wisdom, half of what you worry about never happens, and i arrived with plenty of time to check in, grab something to eat and get settled.

funding for the National Institutes of Health as well as the National Cancer Institute and the FDA has been decreasing since 1988.  there was a slight increase last year, when Congress approved $2b in additional funds to the NIH, but adjusted for inflation we are still down significantly over the years.  Not only does this decrease in funding result in less research taking place because there are fewer grants for which researchers can apply, but it takes a toll on the US economy; more cancer research essentially translates to more jobs and a healthier population.

the climate right now is primed for innovations in cancer treatments.  In this year's State of the Union address, President Obama announced the "Cancer Moonshot," championed by Vice President Biden.  Cancer has been in the news.  Advances have been made in immunology, using the immune system to fight cancer, targeted therapies like Crizotinib, and in using proton therapies instead of IMRT.  But it isn't enough, as i have pointed out countless times before.

we all spent time working with people from our states or nearby states, planning and practicing what we would present during tuesday's meetings.  my teammate for the day was bryan, from Action to Cure Kidney Cancer.  he has spent time lobbying for his own organization in the past and his advice was exactly what i needed to feel a bit more confident going into the meetings.

we met with four staff members, one each from Senators Toomey and Casey's offices, as well as one each from Representative Meehan and Fattah's offices.  we were welcomed into large rooms off echo-y marble halls in three different congressional buildings.  my story is a bit different than the ones they typically hear - either that someone had cancer and it it is in remission or they've been so many years cancer-free or maybe even cured or someone they loved had cancer and they advocate to honor that memory, and with the hope of making this disease disappear.  the concept of living with cancer, of being on treatment indefinitely and dealing with the speed bumps as they surface, is pretty new.  to hear about someone missing 2/3 a lung, who had brain surgery, who has been fighting for almost ten years was something they hadn't heard about.  i got emotional a couple times, seeing the impact of what i told them - that clinical trials have saved me not once but twice, that i consider my doctors, nurses, and support staff part of my family, that i continue to ski, travel, work, and try to have as normal a life as possible - all these things amazed them.  my response was to say i am here because of incredible advances in medicine and the hard work of researchers, but too many people aren't here.  i wore jen's bracelet and it helped me get through the day.  too many people are gone.  and so, the request.  billions of dollars, your dollars and mine, to fight cancer.  i really don't think it is too much to ask.

the entire day was a learning experience, navigating the tunnels connecting the buildings, walking past the Supreme Court and Library of Congress in between meetings, catching a bite to eat on a bench, watching taxis come and go, school groups walking around.  we had received some advice:  wear comfortable shoes because you will be walking all day and most of it will be on marble floors.  i wore my nikes and at the end of the day i was happy i listened to the people who had done it before.  i don't know how women wear heels walking around those buildings.

being in meetings along side people who know about the fight, all the good and all the tough times was something i have been missing in recent months.  it was important to me, being more invested in our government for a day.  going a little deeper than voting.  i don't know whether the funding will be approved in full, nor can i say it will directly help me, but i feel like somehow some small part of the process has in it a tiny crumb of the tough cookie.