Advocacy

St. Baldrick’s Inspires One Family’s Path to Advocacy 

by Julia’s mom, Melissa Alexander
November 10, 2022

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.

Current photo of Julia sitting on stairs

“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

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 at the AACR Annual Conference

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  

Ask Your Lawmakers to Support the Childhood Cancer STAR Reauthorization Act Today!

Read more on the St. Baldrick’s blog:


Kids with Cancer

Meet the RED Sparkle Octopus Crusaders & Their Inspiration 

by St. Baldrick's Foundation
March 18, 2022

by David Gosser, team captain and dad

The RED Sparkle Octopus Crusaders (RSOC) Team honors four children – Nina, Tommy, Amaya, and Kristina – who met in 2005, while in treatment at the Children’s Hospital of the King’s Daughters (CHKD) in Norfolk, Virginia. They started shaving individually in 2005/06 and formed the original team in 2009; this version came together in 2014. Other families affected by childhood cancer and dozens of good friends have joined the team’s efforts over the years. Since inception, the RSOC have raised over $380,000 for the St. Baldrick’s Foundation. They remain fully committed to funding research to create cures, united by the hope that they are helping other kids and families find better outcomes. The team’s name is a combined tribute to the memories of the four Angels.

Photo collage of Nina, Tommy, Amaya, and Kristina

Read more »


Childhood Cancer

2022 Ambassador: Meet “Danica the Brave”

by St. Baldrick's Foundation
January 26, 2022

Once upon a time, in a faraway land called Alaska there was a sweet princess who loved to dance, sing, and giggle. She walked in a swirl of magic, was brave, kind, and full of joy; everyone who knew her adored her. A night for her may have been dark, but it certainly didn’t hide her shine. She battled a monster named ATRT and was known throughout the land as Danica the Brave. This is her story.

Photo of Danica

Read more »


Childhood Cancer

2022 Ambassador: Meet “Super Benji”

by St. Baldrick's Foundation
January 13, 2022

They call him “Super Benji” and the whole room chanted his name when it was his turn at the head-shaving event — a two-time childhood cancer survivor braving the shave for the second time to help raise funds for other kids with cancer. This is Benji.

Benji sitting on a bench.

Read more »


Research

Research Outcomes: Advancing Research to Improve Treatment

by St. Baldrick's Foundation
November 8, 2021

Your generosity makes a difference for kids with cancer. This edition of the St. Baldrick’s Foundation Research Outcomes recognizes research that is making treatments less toxic, evaluating new drugs, and working to prevent late effects. Thank you for making research possible.

Lab Equipment with text: Research Outcomes

Read more »


Research

Dramatic Progress for Medulloblastoma Patients

by St. Baldrick's Foundation
August 2, 2021

Want to know how St. Baldrick’s donors are the saving lives of kids with a common brain tumor? This isn’t just an example of progress – it’s the biggest increase in survival rates many researchers have ever seen from one clinical trial! And that trial was supported by St. Baldrick’s.


Grace was diagnosed with medullobalstoma at age 5. She is an almost-14-year survivor.

Read more »


Facts

What Is Pineoblastoma?

by St. Baldrick's Foundation
May 25, 2021

Real-Life Stories

Being the Mom of a Hero Named Hannah

by St. Baldrick's Foundation
May 7, 2021

On Mother’s Day, we celebrate all moms, each special in her own way. Mothers of kids who have fought childhood cancer have traveled a journey no one would have chosen. May is also Brain Tumor Awareness Month. We asked Gaylene Meeson to share her story of being mom to a very special brain tumor survivor, Hannah.

Gaylene Meeson and her daughter HannahGaylene Meeson and her daughter Hannah, survivor of an aggressive brain tumor called anaplastic meduloblastoma.
Photo by [Kenneth Lim, kennethlimphotography.com].

Read more »


Research

DR. ERIC RAABE VS. PEDIATRIC BRAIN TUMORS

by St. Baldrick's Foundation
July 20, 2020

With a long history of support from the St. Baldrick’s Foundation, Dr. Eric Raabe of Johns Hopkins University is a “Rockstar Researcher” in pediatric brain tumors.

As an undergraduate student, Dr. Raabe volunteered at a children’s hospital where a pivotal moment influenced his decision to become a pediatric oncologist. He vividly remembers a young boy who had relapsed and was being hospitalized after having one of his lymph nodes biopsied. The boy sat alone in his room with the shades down. In the dark room the boy became more and more withdrawn as he sat and waited for the results. He thought he was going to die.

No sooner had the results come back negative for recurrence of his cancer, than the blinds went up and he wanted a pizza with everything on it. The experience left a lasting impression and prompted Dr. Raabe’s decision to become a pediatric physician scientist. In that moment he realized the impact he could make in a scared and sick child’s life. He decided then and there that he wanted to be part of providing a path to hope and a path to a cure. He wanted to help guide these children from the darkness to a place of hope and light.

doctor in mask

Read more »


Childhood Cancer

St. Baldrick’s 2018 Ambassadors: Thank You!

by St. Baldrick's Foundation
December 17, 2018

With 2018 winding down, it’s time to thank this year’s St. Baldrick’s Ambassadors for their help raising funds and awareness for pediatric cancer research. This group of five kids and their families inspired us with their unique stories of courage and their refusal to give up hope.

We’ll be welcoming a new group of Ambassadors in the new year. For now, let’s check in on the 2018 team to see how they’re doing and what they enjoyed about the Ambassador experience.

Collage of images showcasing St. Baldrick's 2018 Ambassadors.

Our 2018 Ambassadors, from left: Brooks, Kellan, Maya, Zach, and Julia.

Read more »


 Older Posts »