Making Change Happen Nationally


 

To Our Nation’s Capitol They Go!


Pancreatic Cancer Advocacy Day includes a Young Advocates training session for ages 6-12.

On June 18, 2013, Ben, Jess, Nikki, Tyler, Rosemary, Trent, Grace, Megan and Jackson bounded up the U.S. Capitol steps with energy and conviction. With the same resolve symbolized by the American flag flying over the Capitol that gray, wind-whipped day, they had a purpose. And they weren’t alone.

More than 500 advocates took part in last year’s Pancreatic Cancer Advocacy Day in Washington, D.C. But these nine, along with others in their group, were unique among most other advocates on Capitol Hill that day. They’re kids, which can really only mean one thing: pancreatic cancer has touched someone they love, and in that way has touched them.

And they were doing something about it.

Here are their stories.

Sizes – Small; Voices – XL


Trent Luna has never known his dad – he passed away of pancreatic cancer when Trent was 3 months old. But he does know how to talk to his elected officials about the urgent need for progress in pancreatic cancer research.

Trent Luna had just wrapped up a very successful kindergarten year at Rosa Parks Elementary in Eastvale, Calif., when he and his mother came to the Pancreatic Cancer Action Network’s Advocacy Day last June. He was 5, the school year in his rear-view mirror and a different kind of learning experience about to begin.

He was there for his father, who lost his fight with pancreatic cancer when Trent was only an infant.

On the Capitol steps, Trent joined in as his fellow advocates – “purple people” to him – chanted, ”Know It…Fight It…End It.”

It wasn’t Trent’s first time at Advocacy Day. He had met in-person with his senators and representatives once before to tell them how important it was to him to make pancreatic cancer a higher national priority, in his own words, of course! He tells them that he takes a stand in the fight against pancreatic cancer because his dad no longer can.

“This is important to me because my dad died when I was only 3 months old, and he is missing out on my whole life,” Trent is apt to say.


Trent Luna was 5 when he met with his California senator’s offices in Washington, D.C., at Pancreatic Cancer Advocacy Day last year.

Trent’s mom, Jennifer Luna, shares that her husband fought an eight-month battle with pancreatic cancer and died at 38 years old. She serves as Advocacy Coordinator for the Pancreatic Cancer Action Network’s Orange County, Calif., Affiliate and says Trent’s involvement alongside her has not only strengthened their mother/son bond, it has made Trent feel closer to a father he will never know.

“Trent realizes he can’t have his Daddy back in his life, but to be an advocate at such a young age, and to speak on behalf of people like his dad who can no longer fight, is an amazing experience for him.

“He’s learned so much about the legislative process, too. He has been able to tell his class, teachers, family and friends about his time in Washington, D.C. How many kids get that opportunity?”

Megan Barber, a fourth-grader from Hartford, Iowa, was Trent’s age when she came to her first Advocacy Day with her mom, Kelly.

This year will be her fifth consecutive Advocacy Day trip. Now 10 years old, she can recall lots of favorite memories of past Advocacy Day events, but she has few memories of her dad. He died of pancreatic cancer when she was only 2.

Megan’s mother, Kelly, Advocacy Coordinator for the Des Moines Affiliate, says she is proud that Megan has played a role in the pancreatic cancer movement.


Megan Barber on the steps of the U.S. Capitol at Pancreatic Cancer Advocacy Day 2013. Megan has attended Advocacy Day five consecutive years with her mom Kelly, front right.

“It’s wonderful that Megan can see that we have a very large purple family,” Kelly says. “She knows that she is not alone in her loss and that she has a voice. Plus, she has learned first-hand that if you’re passionate about something, you can make things happen.”

Megan says she cherishes the experiences she has had in the wake of her family’s very big loss.

“I’ve met many special friends from all over the country, and I’ve learned a lot about pancreatic cancer. It makes me feel happy to be a voice for others.”

Pancreatic Cancer Advocacy Day is for all ages, and the Pancreatic Cancer Action Network holds a one-day training for adults who attend—coaching them on compelling storytelling and what they should ask their members of Congress to do, and overall preparing them for in-person visits with their Congressional leaders on Capitol Hill the following day. There is also a special Young Advocates training for kids ages 6-12, similar to the adult sessions but with a kid-friendly perspective.

This June, as in prior years, Trent, Megan and other children will spend some time in the Young Advocates training drawing pictures and sharing stories of their loved ones who were touched by pancreatic cancer, as well as with new friends.


Megan Barber and her dad, George, who passed away of pancreatic cancer when Megan was 2 years old.

Pictures and stories, along with sweet, yet strong convincing voices, have been known to have a tremendous impact on members of Congress.

In fact, Trent, Megan and other young advocates can count themselves among the “mountain movers” of Pancreatic Cancer Action Network supporters who were able to defy the odds and get the Recalcitrant Cancer Research Act passed last year in a Congress in which less than two percent of all the bills introduced were passed.

Advocacy Day is one of the greatest opportunities of the year to have our voices heard on Capitol Hill and create progress in the fight against pancreatic cancer. Will you join others—young and old—in sharing your passion for change with Congress this year? Registration is now open for the Eighth Annual Pancreatic Cancer Advocacy Day, June 16-17, 2014. To register for the event, or for more information including training sessions for young advocates you may want to bring with you, please visit www.pancan.org/AD2014.