I will never forget the evening of Sunday, December 14, 2014, when the ER doctor and the pediatric neurologist on call entered our triage room and told us that our sweet eight-year-old girl had a huge brain tumor and life-threatening obstructive hydrocephalus. That moment left an indelible mark on my heart. The fear, the heartache, helplessness, and especially the unyielding desire to eliminate our baby’s pain and suffering were soul-crushing.
“Supergirl Julia” today
As we watched our daughter, who we affectionately refer to as “Supergirl Julia” and countless other sweet children suffer through grueling surgeries and treatment, we longed to do something.
What we knew for sure is that kids deserved better. They deserved a chance at a healthy, happy, fulfilling life. We wanted to make it better for these little ones in whatever way we could. It was also important to us to pay forward the love and support others extended to us, but we just didn’t know how. Little did we know, St. Baldrick’s Foundation would soon show us the way.
We were introduced to this amazing organization in 2017 and were immediately impressed with its mission and work to fund research and find a cure for this horrible disease and knew this was how we wanted to support the cause. St. Baldrick’s asked Supergirl Julia to serve as one of their 2018 ambassadors, and that experience was life-changing for our family.
Julia with her parents at Childhood Cancer Action Days in 2018
During Julia’s ambassadorship we learned about The Alliance for Childhood Cancer, a coalition of advocacy groups and nonprofits which St. Baldrick’s co-chairs, and who also sponsors an annual Childhood Cancer Action Days on Capitol Hill. We were invited to participate for the first time in 2018, and the events of the day were so uplifting. Meeting other parents and survivors like us and having a platform to share our stories with our legislators and encourage them to support pediatric cancer legislation further ignited our spirits of advocacy.
I will never forget the feeling in the Summer of 2018 when we found out that the STAR Act, the most comprehensive piece of childhood cancer legislation, was passed. My heart soared knowing that our little family was a part of making that happen. I’ve participated in every Action Day since, even virtually during the pandemic. Our family has extended our advocacy to work with state organizations and now attend Childhood Cancer Action Days at the Virginia State Capitol.
Most recently, I was honored to be selected for the American Association of Cancer Research (AACR) Scientist <-> Survivor Program. Through this program over 30 cancer advocates were invited to participate in the huge AACR Annual Conference in New Orleans and collaborate with the 20,000 researchers, doctors, and members of the medical field in attendance.
Another St. Baldrick’s mom and I were two of the three pediatric cancer advocates represented in the program, and we learned so much about the latest advancements in cancer research. We attended lectures by some of the world’s most renowned researchers, and I was filled with hope at the information I received on pediatric brain cancer research. Dr. Anna Barker, past deputy director of the National Cancer Institute (NCI), founded the program, and it was wonderful to be embraced and respected by medical practitioners who believe in the essential role advocates play in the fight against cancer.
Melissa and Dr. Ramakrishna
Our primary assignment was to present a poster on our advocacy target. It was such an honor to share with the conference participants St. Baldrick’s great work for pediatric cancer patients. I specifically focused on the success of the Survivorship portion of the STAR Act and the difference made in four short years to advance research and assistance for pediatric cancer survivors.
I was especially thrilled when one of our Supergirl’s very own oncologists Dr. Sneha Ramakrishna stopped by my booth. Not only did she take care of our sweet girl for an entire year during her fellowship at Johns Hopkins, but Dr. Ramakrishna is also conducting groundbreaking research with support from the St. Baldrick’s Foundation–SU2C Pediatric Cancer Dream Team* grant. It was a full-circle moment, and I was overwhelmed with emotion.
St. Baldrick’s Foundation, without a doubt, played a pivotal role and served as a primary inspiration for our family’s extensive involvement in the cause today. We are forever grateful for our experience so far as pediatric cancer advocates and appreciate this wonderful organization for inspiring us to make this work a lifetime commitment.
I encourage you to join the fight to find a cure and give kids a lifetime. One way to get involved is by building support for the Childhood Cancer STAR Reauthorization Act. This bill will allow the programs from the STAR Act – including the investments in childhood cancer research and survivorship programs – to continue for 5 more years.
Click the link below, or text STAR4KIDS to 52886 to take action today
*Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer).
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