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!

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Research

Announcing St. Baldrick’s Foundation July 2022 Grants 

by St. Baldrick's Foundation
July 27, 2022

St. Baldrick’s donors have just funded over $8.9 million to advance research to find cures for childhood cancers and give survivors long and healthy lives. This investment brings the total granted by St. Baldrick’s for research since 2005 to more than $322 million.

These 23 new grants include:

  • 7 new St. Baldrick’s Scholars
  • 9 current Scholars receiving continuing funding for another year of research
  • 2 new International Scholars, one from Egypt and one from Jordan
  • 1 current International Scholar from India receiving funding for another year of research

The remaining grants support the clinical trials of the Children’s Oncology Group and another year of funding for 2 team science (consortium) projects and for the Pediatric Cancer Data Commons.

The St. Baldrick’s Foundation supports lifesaving research throughout the world, awarding grants that focus on all major types of childhood cancers. Read on for more about just 3 of these new research projects. Explore the links at the bottom to view all the grants.

Understanding Radiotherapy and Pediatric Brain Tumors

St. Baldrick’s Scholar, Dr. Claire Vanpouille-Box, is advancing research into radiotherapy treatment for brain tumors. Recently scientists found that radiotherapy can activate the immune system against multiple tumors. However, the tumors of patients who undergo radiotherapy always regrow, which suggest that radiotherapy is not activating immunity against these tumors. Dr. Vanpouille-Box will work to understand why this is happening to develop strategies that will improve treatment for pediatric brain cancer patients.

Developing an Inexpensive and Accurate Cancer Detecting Tool

St. Baldrick’s International Scholar, Dr. Anirban Das is developing a new, inexpensive tool to identify children with a genetic variation that can lead to deadly cancers which may not respond to conventional treatments. Many older tests often fail to detect this genetic trait accurately. With this new tool, Dr. Das has found that these cancers may be more common than previously thought, and can also develop in adolescents and young adults. The tool also helps detect patients whose cancers do not respond to chemotherapy and radiation but could respond to immunotherapy. With this additional year of funding, Dr. Das is now expanding the use of his tool to identify additional patients and cancer types who may benefit from this approach. This is important especially for developing countries, where such cancers are more prevalent. The low cost, and the ability to diagnose the genetic condition from tumors directly, or even from saliva without additional blood tests, are distinct advantages in these resource limited settings.  

Advancing Research into Rare Cancers like Histiocytosis

The St. Baldrick’s Foundation has supported the North American Consortium for Histiocytosis (NACHO) since 2014. Histiocytosis is a group of rare disorders, most common in children, in which there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation. Before NACHO, there was little progress in knowledge and new therapy development for this wide variety of conditions. NACHO has 63 member institutions working together and with this additional year of funding they aim to keep growing so that children all over North America will have access to clinical trials that could save their lives. 

Thank you for supporting the best research, no matter where it takes place, to help all kids with cancer survive and thrive.

The full list of institutions receiving grants:

The next set of grants will be announced in November, supported by donations between now and October. Visit the St. Baldrick’s grants page to learn more about all the research you’re making possible.

Donate now and help support research into better treatments for kids with cancer

Donate

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Facts

Q&A On Fertility After Adolescent or Young Adult Cancer

by St. Baldrick's Foundation
June 9, 2022

Each survivor’s risk of late effects of cancer treatment depends on their tumor, specific treatments, age, genetic makeup and other factors. Surgeries, chemotherapies, radiation, stem cell transplants and other treatments take a toll on the body – and sometimes the mind – in many ways. Some late effects make life more difficult; others are life-threatening.

Heart and lung problems are common, as are secondary cancers.

Other late effects can include hearing problems, hormonal imbalances, difficulty growing, mental health needs or cognitive deficiencies, bone density issues and easy bone fractures, fertility and reproductive problems, and more.

Survivorship is a lifelong journey. By age 50 childhood cancer survivors have experienced, on average, 17 adverse effects, 3 to 5 of those being severe to life-threatening. Also by age 50, over 99% of today’s childhood cancer survivors have a chronic health problem by age 50 because of the treatments they had as kids.

We asked St. Baldrick’s Scholar Dr. Hazel Nichols to tell us about some of the reproductive health issues faced by adolescent and young adult (AYA) cancer survivors:  

How does cancer treatment impact fertility?

Cancer treatments can potentially affect future fertility. For example, radiation therapy to or near the abdomen, pelvis, or spine can harm nearby reproductive organs. Radiation therapy to the brain can also damage the pituitary gland, which helps control the production of certain hormones needed for pregnancy.

Some types of chemotherapy can affect the ovaries, reducing the number of eggs and changing hormone levels. Having been treated for cancer during adolescence and young adulthood can also affect sexual health, body image, and financial stability during childbearing years.

Read about 2012 St. Baldrick’s Ambassador Sarah’s dreams of becoming a mom here 

Do patients or their families receive counseling on these options?

Counseling patients on the effects of cancer treatment on fertility and options for fertility preservation is recognized as a critical part of high-quality cancer care. National guidelines recommend fertility counseling for AYA patients before cancer treatment.

However, fertility counseling has been described as one of the most under prescribed and least implemented services in cancer care. More than half of AYA cancer survivors report needing more information for reproductive planning both before and after cancer treatment. This unmet need has been associated with lower emotional functioning and health-related quality of life.

How is your St. Baldrick’s supported research helping childhood cancer survivors?

Despite advances in fertility preservation options and recognition of fertility counseling as a part of high-quality cancer care, the incidence of post-diagnosis childbirth has remained stable for many years.

My research is working to understand what the needs and challenges are for accessing fertility-related services.

Specifically, I am examining AYA cancer survivors’ age, race, and rural residence in relation to using fertility preservation options. We hypothesized that fertility preservation will be more common at older ages and in more recent diagnosis years, and will be less common for AYAs with a rural residence or African American race. Our research helps identify barriers to use of fertility services to inform strategies to improve cancer care delivery.

We showed that, during 2004-2015, only 1.2% of female AYA cancer survivors froze eggs or embryos for fertility preservation after cancer diagnosis in North Carolina. Younger women were 6 times more likely to use fertility preservation than older women. Women who were Black or who lived in rural areas or had lower socioeconomic status or had children at diagnosis were less than half as likely to use fertility preservation. We believe these results highlight the barriers that that cost creates for accessing fertility preservation, and caution that women who have children already may less often receive fertility counseling around having additional children in the future.

June is National Cancer Survivor Month, a time to celebrate childhood cancer survivors – and to keep the focus on progress. St. Baldrick’s will continue to support research not only to find new cures, but better ones.

(2022). Disparities in fertility preservation use among adolescent and young adult women with cancer. Journal of cancer survivorship : research and practice, 10.1007/s11764-022-01187-y. Advance online publication. https://doi.org/10.1007/s11764-022-01187-y

Help kids to survive and thrive. Support research into better treatments for kids with cancer 

Donate

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Research

Rolling Up Their Lab Coat Sleeves: The 2022 St. Baldrick’s Fellows

by St. Baldrick's Foundation
March 14, 2022

The next generation of childhood cancer researchers is rolling up their lab coat sleeves and doubling down on the fight to end childhood cancers.

Thanks to donors like you, these doctors will train with leaders in the field and launch new research projects to answer pressing questions in the quest to conquer childhood cancers.

Explore the new research you’re supporting:

New fellow headshots with text Announcing New St. Baldrick’s Foundation Fellowships

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Research

Announcing St. Baldrick’s July 2021 Grants

by St. Baldrick's Foundation
July 20, 2021

This new investment of $3.5 million brings the total granted by St. Baldrick’s for research since 2005 to more than $310 million.

The 9 grants include new funding for 3 new St. Baldrick’s Scholars, and 1 new International Scholar from Uganda. Also receiving new funding for projects already underway are 4 team science projects (Consortium grants) and 1 Strategic Initiative: the Pediatric Cancer Data Commons.

child cheering text says New Funding AnnouncementHonored Kid Augie

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Research

Combined Efforts: First Partnership Grants of the St. Baldrick’s Foundation and the American Cancer Society

by St. Baldrick's Foundation
May 14, 2021

When a patient is fighting cancer, a combination of two cancer treatments often works better than just one. Since August of 2019, another kind of combination has been at work to fight childhood cancers: A partnership between the St. Baldrick’s Foundation and the American Cancer Society.

Today we are excited to announce the first set of research projects to be supported by this partnership, totaling more than $2.8 million.

St. Baldrick’s Foundation and American Cancer Society Partnership

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Research

Announcing the 2021 St. Baldrick’s Fellowship Awards

by St. Baldrick's Foundation
March 15, 2021

The next generation of childhood cancer researchers are hard at work to create better futures for kids with cancer. Thanks to your fundraising and generosity there is hope, and the future is bright!

You – St. Baldrick’s donors and fundraising participants – make this possible. Thank you!

St. Baldrick’s Foundation Fellowship Awards support new pediatric oncology doctors for two to three years to conduct childhood cancer research while receiving advanced training under a mentor.

Take a look at the three stellar new 2021 Fellows whose research you’re supporting:

Fellows Headshots

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Research

Research Outcomes: Progress to Give Kids a Lifetime

by St. Baldrick's Foundation
November 10, 2020

In a year when it feels like most things have stopped due to the pandemic, research continues. While most research labs were affected by shutdowns for a time, researchers have found ways to carry on, working hard to find cures for childhood cancers and give survivors long and healthy lives. Read on to see a few interesting outcomes you’ve made possible.

lab image

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Research

Research Outcomes: Next in a Series

by St. Baldrick's Foundation
November 6, 2019

In August of 2019, we blogged about several research outcomes that were fueled by St. Baldrick’s donations and published in scientific journals so that other researchers can build upon them. Research publications are a major way that science moves forward.

With more than 200 new publications a year resulting from research supported by St. Baldrick’s, we’ve decided to make this an occasional series, to highlight some of the most interesting outcomes you’ve made possible.

Test tubes in a scientific lab.

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