06/17/2011 10:38 am ET | Updated Aug 17, 2011

An Exclusive Club You Don't Want an Invitation To

July 4th will mark the third anniversary of the death of my husband, Rand Skolnick, from pancreatic cancer. A perfectly healthy man at 49, he was diagnosed on March 4th of 2008 and died four months later shortly after his 50th birthday.

Since his death I have carried on his legacy through The Palette Fund, a foundation honoring Rand's life that has granted more than $2 million to programs in the areas of Nutrition & Wellness, Patient Navigation and Lesbian, Gay, Bisexual and Transgender human rights. Nothing I have done prepared me for Pancreatic Cancer Advocacy Day in our nation's capital.

I arrived alone at 2:00 AM to check into my hotel for the Pancreatic Cancer Action Network's 5th annual Advocacy Day. Although I had met with staff from the organization over the past two years and The Palette Fund has awarded them a $500,000 grant for their patient advocacy outreach program, this would be my first time surrounded by others who have also been touched in some way by this terrible disease. Filled with anxiety and memories of those horrific months, I tossed and turned through the short night knowing that I would be confronted with it all over again in the morning. I wished I had thought to ask someone to come with me.

Hours later, I walked into the ballroom to a sea of purple (the dedicated color of pancreatic cancer) and had a moment of panic. I was wearing dark jeans, a blue checked shirt, and looking at the crowd I quickly noticed that just about everyone had arrived in DC with family, friends and other support. The founder of the Pancreatic Cancer Action Network approached me and gave me her usual hug and smile. The panic started to fade, and she began introducing me to others. I wasn't as alone as I thought.

We quickly learned that this amazing room had grown from 31 people in 2007 to an astonishing 550 advocates from ALL 50 states today. The only thing most had in common was that this devastating disease had taken someone they love from their life. 75 people in the room were rare survivors of this cancer that usually takes those diagnosed within six months, as it did my husband Rand.

The CEO of the Pancreatic Cancer Action Network ( began by saying "I know that this is not a club you would have picked to be a part of, but you are now part of an amazing group of people who will change the course of history for Pancreatic Cancer." The goose bumps covered my body at this moment and were with me all day.

Over the course of that first morning, we learned every grave statistic we needed to educate our representatives on the importance of the pending Pancreatic Cancer Research and Education Act and why we need their support to ensure that funding for cancer research would not be cut in the coming years. This legislation would create a strategic plan for true progress on pancreatic cancer by better targeting research, developing a cadre of committed scientists, and promoting physician and public awareness. It all seemed very logical. So logical, in fact, that I could not believe this same bill didn't make it to the floor for a vote last year. I was ready to demand change.

After that, we shared our journeys and the events that led us to Advocacy Day. A wife who lost her husband in 31 days; a 6-year-old who had drawn a picture of her father and couldn't get out the words "Pancreatic Cancer" without breaking down in tears when asked what happened to him; a woman who had lost five members of her family to the disease; and on it went. In a panel with top researchers, one survivor stood up and asked, "What has been done to figure out why I am still alive, and what is being done to help my grandchildren survive?" The silence was deafening.

The truth is, pancreatic cancer patients generally receive the same diagnosis today that they received 40 years ago with the enactment of the 1971 National Cancer Act. In fact, pancreatic cancer remains the only cancer tracked by the American Cancer Society and the National Cancer Institute that still has a five-year survival rate in the single digits at a mere six percent. To compare, breast cancer is now at a 90% five-year survival rate. In 2010, over 43,000 Americans were diagnosed with pancreatic cancer and nearly 37,000 died.

When looking at the amount of dollars allocated to the other top five killing cancers versus survival rate, it is clear that pancreatic cancer is the least funded and has the lowest five-year survival rate. In 2009, pancreatic cancer was allocated less than $100 million from the National Cancer Institute, while breast cancer received more than $600 million. Sadly, researchers follow the money, and there simply isn't enough research dollars to continue the progress scientists have begun to make. In the meantime, people continue to die at a staggering rate, and loved ones are left behind so quickly they barely remember how it happened.

Despite the tears, hugs and frustration of the training day, everyone seemed to gather themselves for Advocacy Day as 550 "purple people" stormed the Hill to demand hope and change for pancreatic cancer. We made our way through the congressional halls, constantly running into other advocates holding the picture of a lost loved one, ready to educate our nation's capital on one of our country's deadliest diseases. It was time for our representatives to listen and co-sponsor the Pancreatic Cancer Research and Education Act.

Although we were all there to educate and demand that Congress take action, it became clear that many of us also came to Washington to continue our own healing journeys, sharing our stories, listening to others, and being there for those we had only met hours before. After hearing a widow telling our state representative how quickly she lost her 47-year-old husband and listening as her daughter spoke about not having her father there for her graduation or to walk her down the aisle, the nurturing hug I offered felt so natural, like I had been consoling this woman through her whole journey. We had only met at breakfast that morning.

Unlike many other diseases, pancreatic cancer doesn't have the usual numbers of survivors to be its advocates for change. Mostly, it is those left behind after the loss of a loved one demanding action and asking for hope: children, grandchildren, husbands, wives, brothers and sisters. It is not easy publicly recounting the loss and horrific pain from losing our loved ones to this terrible disease, but we are their voice in this fight and for some, it is the only way to heal.

Overall, the stories of the meetings on the Hill were very encouraging. Even those advocates who didn't receive positive feedback still felt inspired and convinced that we were making a difference. We stand ready to follow up in the weeks to come to continue the fight to create meaningful and lasting change and bring the Pancreatic Cancer Research and Education Act to a successful vote on the floor.

The exhausting day came to an end as we finished up our meetings and gathered for a picture in front of the U.S. Capitol. I may have arrived in Washington alone, but I left the city feeling loved, fulfilled and hungry to do more. This amazing group of people was introduced as an exclusive club I never wanted an invitation to join, but has become a family I didn't even know I had, another amazing gift Rand left for me. Thank you, Pancreatic Cancer Action Network, for all that you do. And thank you to the hundreds of people I met over the last two days for providing the love and support -- and being the advocates -- that I clearly needed.