Melinda Marchiano

“With Blessing Come Sacrifice” Making Childhood Cancer Advocacy History at the White House

This September– this Childhood Cancer Awareness Month– is one that will be remembered as pivotal in the history of childhood cancer. Because of the inexhaustible efforts of a few dedicated childhood cancer activists, last Friday, September 19, 2014, became a monumental step toward more funding and support for pediatric cancer research. For the very first time in history, the White House Office of Public Engagement opened its doors with an invitation to a small group of childhood cancer advocates to attend a Briefing and Discussion with Pediatric Cancer Advocates.

Prior to this meeting, I attended the 5^th Annual Congressional Childhood Cancer Caucus, hosted by Co-Chairs Congressmen Michael McCaul and Chris Van Hollen in the Congressional Auditorium, Capital Visitors Center. The mission of the caucus is to bring awareness to childhood cancer. Congressman McCaul spoke of his best friend in school who died from leukemia and the impact it has had on his life. He added that his wife is also passionate about the issue of childhood cancer. Congressman Van Hollen spoke next, encouraging all of us to come up with new ideas on how we can “tackle and defeat” childhood cancer in light of plummeting funding from the NIH in recent years.

One of my favorite speakers of my entire time in Washington, D.C. was the next speaker at the Childhood Cancer Caucus. Dr. Francis Collins, physician, geneticist, respected scientist, and accomplished guitar player, spoke eloquently about how “exhilarated” he is by science and new things happening. His caring heart was clearly evident.

“We have to pull out every possible stop.”

~Dr. Francis Collins / Director, National Institutes of Health

He explained how cancer is a disease of the genome, or “misspellings in the DNA Instruction Book.” He added that every cancer is different which means every cancer needs individual treatment. Further, he spoke about the Cancer Genome Atlas, TCGA-Pediatric Cancer Genome Project, TARGET, Oncogenes, how the cost of Human Genome Sequencing has dropped drastically, Immunotherapy, and the effects of the 23% funding cut to NIH. Scientists who are considering research in the field of pediatric cancer face the reality that only 16% of grant applications receive funding. This means we are chasing the best and brightest researchers away from childhood cancer research when we desperately need them! When we find a way to allow our brilliant, passionate scientists to perform their research without spending tons of their time writing grants that will never be funded, there will be great advances!

Dr. Collins closed by comparing our joint mission for cures for all children with cancer to a symphony where all of us work together. He asked, “Push us.”

“I give my word I will do everything I can…”

~Dr. Francis Collins/Director of the National Institutes of Health

I believe Dr. Collins when he says he will do everything he can.

After the Caucus meeting, there was a luncheon to honor the Childhood Cancer Congressional Caucus in the Rayburn House Office Building. What an enjoyable time it was connecting with so many other advocates I have only known from communicating online!

Post lunch, it was time to head to the White House. After a taxi ride with Ellyn Miller (Smashing Walnuts Foundation) and Tatto Tom (Stillbrave Foundation,) I met—for the very first time—Tony Stoddard (A Day of Yellow and Gold to Fight Childhood Cancer.) What it meant to me to look into this man’s eyes and thank him for all he has done and all he is doing cannot be expressed with our current English language. The meeting with the White House Office of Public Engagement would not have happened without this man’s passion to help children with cancer.

With Tony Stoddard before going through security at the White House–

Bob Pinewski (PAC2) and Rob Whan (Caleb’s Crusade)

What we truly need right now to be able to use the current forward momentum are collaboration and cohesiveness. As a community, we need to act, speak, and step as one. Our elected leaders in Washington, D.C. are beginning to hear our collective voice. 

As Childhood Cancer Awareness Month winds down, and pink ribbons and bows begin their beautiful displays, we need to step up our advocacy and activist efforts. We need to recognize this moment of opportunity and seriously jump on it. It’s time for us to combine forces with industry, scientists, and advocates to create change. It’s time to abandon old, toxic treatments and usher in “Precision Medicine” that will heal and not harm our children.

September 19, 2014 is a day I will always remember. The doors of the White House opened to the needs of childhood cancer. I am greatly blessed to have been an invited guest on this historical day.

As the King of Siam says in The King & I, 

“With blessing come sacrifice.”

With pleasure, I will sacrifice for cures for all children with cancer.

You with me? 

Beth Anne Baber, Ellyn Miller, Tony Stoddard, Lee Marchiano, Joe Baber, Maureen Lilly, Ruth Hoffman and Andy Mikulak

Guest Blogger: Lee Marchiano