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 

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Advocacy

Advocacy Is Making a Difference

by St. Baldrick's Foundation
May 26, 2022

The childhood cancer community is filled with passionate, dedicated advocates rallying together to make a difference for kids with cancer and childhood cancer survivors. Thanks to the tremendous advocacy of the childhood cancer community, Congress, the Administration, and the National Cancer Institute (NCI) are taking notice.

Over the last five years, childhood cancer advocates have successfully lobbied for meaningful policies and changes. Back in 2018, Congress unanimously passed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, the most comprehensive childhood cancer legislation in history.

And the community’s advocacy didn’t stop there. Each year since the STAR Act was signed into law, Congress fully funded the programs STAR created, providing $30 million each year in new resources for childhood cancer. Now Congress is poised to extend the STAR Act further. Just last month, childhood cancer champions introduced H.R. 7630/S. 4120, the Childhood Cancer STAR Reauthorization Act to allow the programs from the STAR Act to continue for five more years.

On the heels of the success of the Childhood Cancer STAR Act, the Childhood Cancer Data Initiative (CCDI) was created in 2019 with the goal of funding $50 million in new childhood cancer research funding each year for ten years. As with the STAR Act, the childhood cancer community has successfully advocated for full funding for CCDI each year. That means Congress has provided $270 million in new resources for childhood cancer since the STAR Act and CCDI were created.

These accomplishments in advocacy are also changing the research landscape at NCI. For many years, the childhood cancer community has rallied around a particularly startling statistic: Less than 4% of the National Cancer Institute’s (NCI) budget funds childhood cancer research. This number so strikingly sums up the frustration about the lack of investment in treatments for kids with cancer and the slow pace of research. The 4% statistic has been a rallying cry for the childhood cancer community to demand better for kids with cancer – and after years of advocacy for more federal research funding, that 4% statistic has indeed changed. Thanks to the tremendous advocacy of St. Baldrick’s advocates and the childhood cancer community, NCI has nearly doubled its investment in childhood cancer research in recent years

The groundswell of advocacy and the investments foundations like St. Baldrick’s makes in early-career researchers and groundbreaking research have paved the way for more funding for childhood cancer research at NCI. In federal fiscal year 2020, NCI spent more than $500 million on childhood cancer for the first time, representing nearly 8% of its total budget that year.

But the work doesn’t stop here. The St. Baldrick’s Foundation will continue to keep up the pressure for more funding to develop new, safer therapies for kids with cancer. Join us today by urging your members of Congress to cosponsor the Childhood Cancer STAR Reauthorization Act, which will allow the programs – and funding – from the STAR Act to continue for five more years.

Click the link below, or text STAR4KIDS to 52886 to take action today.

Ask Your Lawmakers to Cosponsor the STAR Reauthorization Act Today!

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Research

Research Outcomes: Incredible Impact and Hope

by St. Baldrick's Foundation
May 13, 2022

Your generosity makes a difference for children and young adults with cancer. Read on to see a few recent examples of the incredible impact you have on pediatric cancer research.

image of lab equipment with text Research Outcomes

Immunotherapy for DIPG

Diffuse intrinsic pontine glioma (DIPG) and other diffuse midline gliomas are universally fatal pediatric brain tumors. Researchers on the St. Baldrick’s Foundation Stand Up to Cancer Pediatric Cancer Dream Team are taking what they have learned from treating blood cancers with CAR-T cell immunotherapy and are applying it to these solid tumors.

It’s not often that thousands of scientists break into enthusiastic applause during a presentation of research outcomes, but that’s what happened in April at the annual meeting of the American Association for Cancer Research. It was during a presentation by St. Baldrick’s Scholar and member of the St. Baldrick’s Foundation – Stand Up to Cancer Pediatric Cancer Dream Team, Dr. Robbie Majzner, reporting the following.

Results published in Nature from the first 4 patients enrolled in a clinical trial show consistent effectiveness, and some trial patients have seen their tumors shrink by 95% or more—a dramatic achievement never before seen in DIPG. Though some have since died, most survived far longer than expected and with a greatly improved quality of life. While more research is needed, these findings provide much-needed hope for families.

Using Nanoparticles to Improve Medulloblastoma Treatment

While most medulloblastoma patients are cured with standard treatment, they are typically left with debilitating side effects, so better treatments are needed. A new study published in Science Advances by St. Baldrick’s Foundation Scholar Dr. Timothy Gershon shows that placing a cancer drug, palbociclib, in nanoparticles helps the drug reach tumors better and stay in the body longer. Palbociclib is currently used as a breast cancer treatment.

What are nanoparticles? In medicine, nanoparticles can be used to carry antibodies, drugs, imaging agents, or other substances to certain parts of the body — similar to a tiny soap bubble with the drug cradled in the center.

This study showed palbociclib on its own did not shrink tumors, but when combined with another drug, sapanisertib, and placed in nanoparticles, the cancer models showed better results. While these results are promising, more work is needed to bring this to human clinical trials and researchers are currently working towards that goal.

Clinical Trial Shows Exciting Results for Kids with T-LL and T-ALL

Results from an international phase 3 Children’s Oncology Group (COG) clinical trial could change the standard of care for patients with T-cell lymphoblastic lymphoma (T-LL) and T-cell acute lymphoblastic leukemia (T-ALL).

Researchers found that adding the drug bortezomib to chemotherapy significantly improved overall survival in children and young adults with newly diagnosed T-LL. Additionally, this study found that radiation treatment could be eliminated in 90% of children with T-ALL when the chemotherapy regimen was intensified, decreasing harmful long-term effects of treatment. These exciting findings were recently published in the Journal of Clinical Oncology.

Since becoming an independent foundation in 2005, the St. Baldrick’s Foundation’s largest grant recipient has been the COG, with funds distributed to each COG member institution to subsidize the cost of treating children in clinical trials. St. Baldrick’s has awarded more than $90 million to the COG.

Repurposing Drugs for Pediatric AML

There are numerous subtypes of pediatric acute myeloid leukemia (AML), some with an extremely poor prognosis. Precision medicine is one way to drive progress in pediatric AML. Supported in early stages by the St. Baldrick’s Foundation, the Target pediatric AML (TpAML) group has been performing genetic sequencing to identify promising drug targets.

In the best-case scenario, through sequencing, a new target is found for which a targeted drug already exists. Researchers can then repurpose these existing drugs to treat AML.

After performing genetic sequencing AML researchers have found 4 existing drugs show promise for pediatric AML treatment. In one case, a well-tolerated ovarian cancer drug was identified.

Recently, two of these drugs have been used to treat patients via compassionate use and have shown positive results. The researchers will next work to complete clinical trials to further evaluate the drugs as therapeutic options.

Not every publication of research supported by St. Baldrick’s makes the news, but each one adds to the body of scientific knowledge that takes us one step closer to better outcomes for kids with cancer. Your continued support will make more research possible to Conquer Kids’ Cancer.

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

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Do What You Want

Buckets for St. Baldrick’s

by St. Baldrick's Foundation
April 5, 2022

By Sir Bodie Centore, Knight of the Bald Table, now age 17

My Buckets for St. Baldrick’s fundraiser, a 3v3 basketball tournament held in Syracuse, NY, raised over $10,000 for childhood cancer research on March 20th. While this event surpassed my fundraising goal, it also had an impact even more significant than anything I had experienced in 10 years of fundraising for St. Baldrick’s.

I became involved with the St. Baldrick’s Foundation 10 years ago after hearing about the local Syracuse, NY event at Kitty Hoynes Irish Pub & Restaurant from family and friends. I was intrigued, but as a 7-year-old, very nervous about having my head shaved. Earlier that year, I spent several days in the hospital with pneumonia. I didn’t understand cancer much then, I couldn’t even spell it, but I knew I hadn’t enjoyed my time at the hospital and I didn’t think kids should have to go through anything like that.

Bodie at his first shave with Emcee Chow DowneyBodie at his first shave with Emcee Chow Downey 

With this in mind, I decided to shave. I called my family members and wrote a letter that I took door-to-door asking for donations. I surpassed my goal and raised over $3,000.

That first year I began using two fundraising tactics that helped me greatly over the next eight years of shaving: a hand-written letter to ask for donations, and a similarly hand-written, personalized thank you note after receiving them.

The day of my first shave in 2012, I was filled with nervous excitement. When it was over, I said it “tickled so much it hurt,” but also that I felt “spectacular.” I had two main takeaways: I wanted to do it again, and I wanted to go bigger.

The next year, I raised my goal, but more importantly, started my own team. We raised $10,000, and shaving with a team of my friends made St. Baldrick’s even more fun.

In 2014, the Baldacious Baldies grew bigger and we raised $16,000. Some students from Syracuse University did a short movie about us and we were featured in the local newspaper. It all felt very cool to 9 year-old-me. I loved checking the Top of the Charts board every day to see where I ranked, and for the first time I was near the top of the list.

When I turned 10, I started to gain a better understanding of cancer when I met a child, 4-year old Ocasio, who had a brain tumor and was given only a few months to live. Ocasio was one of my honored kids that year, and meeting him inspired me to fight harder for kids with cancer as I was shocked by the devastation the disease caused. I began to raise more money and to build my team by recruiting more friends.

By my 6th year, I gained even more determination to raise the most money possible when our family friend’s baby, Archer, was diagnosed with a Wilms tumor at 7 months old, and a girl in my class, McKenna, was diagnosed with leukemia.

Bodie with Archie and his familyBodie with Archie and his family 

Each year I added more fundraising methods. I put jars out at local businesses and emptied them every week, and I collected bottles and cans under the slogan “All the pennies count!” I wrote a rap and made a beat on Garageband and posted it to my page. That year I was the No. 1 fundraiser at Kitty Hoynes, raising over $16,000. The Baldacious Baldies had grown to 25 members and raised $37,000.

Going into my 8th year of shaving, I met a boy named Charlie, who was two years older than me who had a DIPG brain tumor, which has no viable treatments. I was moved by the way he talked about his cancer, and his ability to be so composed about it at such a young age. That year, I started speaking at local Rotary clubs and my church, and worked with a local gym on a charity workout. By now, I was immensely motivated to fundraise by all of the kids I had met, especially Charlie, as I saw someone my age battling cancer, and understood how difficult of a thing that would be. I raised $27,000 that year, my team raised $54,000, and I was named a Knight of the Bald table for shaving for 8 years.

Charlie died in August 2019. I was stunned and upset when I found out, but at that moment, I knew I would try my hardest to raise as much as possible in his honor for my final shave when I was in eighth grade. In my letter that year, I wrote that my goal was to “inspire others as I had been inspired.” I made another video, increased all of my usual fundraising activities, and pushed my team members to raise as much as they could. Ultimately, I was able to raise over $31,000, and my team raised nearly $55,000. I was the No. 1 fundraiser at Kitty Hoynes, and my team was the No. 1 team at Kitty Hoynes. It was an incredible last shave.

I shaved for 8 years and in 7 years the Baladacious Baldies raised over $250,000.

The Baldacious Baldies post-shaveThe Baldacious Baldies post-shave 

More Importantly, Ocasio, Archer and McKenna are all now cancer free.

After my last shave I wanted to continue supporting St. Baldrick’s, but I wanted to keep my hair. I didn’t know how I could help without shaving. I filmed a video with legendary event emcee Chow Downey at Kitty Hoynes to promote the next shave, but COVID hit and everything was canceled for two years. It was frustrating that I couldn’t help. I knew, when I could, I wanted to do something bigger, I just didn’t know what.

Inspiration came after volunteering at a soccer shootout fundraiser. I thought I could do something similar with basketball. Basketball is the most popular sport in my school district from elementary school through high school, and I have great memories of going to basketball camps there and playing in 3v3 round-robin tournaments. Kids love participating in these types of tournaments.

I wanted to host a basketball tournament for kids and hold it in late March during the NCAA tournament to benefit from the basketball craze that descends upon my school district during the NCAA tournament time.

I discovered St. Baldrick’s “Do What You Want” fundraiser option, where you can create any fundraiser you want with their support, and I knew this was a perfect fit.

However, I was nervous of what others would think about my idea, and didn’t tell anyone outside of my family for a few months.

The first person I told was my former JV basketball coach and gym teacher, who loves basketball and runs multiple basketball camps and leagues. I was incredibly nervous, but he was extremely supportive right away and offered to help. I reached out to more school officials to get their approval, with similar levels of anxiety, and everyone strongly supported the idea. But it was already December, and if I wanted the event to happen in March, things would have to get done fast.

At this time, I was busy balancing running track and performing in the school musical, and I felt like I had no time to plan the event, yet the weeks kept slipping by. I considered pushing it back a few months but I knew this wasn’t what I wanted.

I wanted to get back to raising money for childhood cancer research, and fighting for the kids battling the disease. On the last possible day, I submitted paperwork for school board approval of the event. With that, Buckets for St. Baldrick’s was official for March 20, only two months away.

There was no turning back now.

I created my fundraising page on the St. Baldrick’s site, wrote my letter and worked with my old coach to develop the registration form. We started promoting the event with flyers, school announcements and social media posts. I designed a T-shirt with the help of our high school art teacher, and with the help of an old shaving teammate, reached out to local grocery stores for food donations. On top of that, I sent emails to business owners asking for sponsorships to cover my event costs. I wanted every penny possible to go to St. Baldrick’s.

By February, I had sponsors and donors, a T-shirt design and many old Baldacious Baldies lined up to referee. We received bracelets, T-shirts, pins, and buckets from St. Baldrick’s, and designed promotional posters and posters thanking our sponsors. I set a goal to get 40 teams and $5,000 raised.

Everything was coming together and there was seemingly an incredible amount of community support, but two weeks away from the registration deadline, we had just a handful of teams registered and just over $1,000 in donations.

Thankfully, as the weeks progressed, the teams rolled in and the brackets started filling up. The day before the event, we went to the school to hang the St. Baldrick’s banners, get the TV working to stream the March Madness games, and set everything else up. When we were done, I was confident we were going to have a great event.

The morning of Buckets for St. Baldrick’s, the gym buzzed with excitement as the first division of second and third graders arrived. Parents filled the bleachers to watch, something I hadn’t expected, and the gym was electric. I kicked off the event with a quick speech and we were finally underway.

Bodie recruited many of his Baldacious Baldies team members to volunteer at the tournamentBodie recruited many of his Baldacious Baldies team members to volunteer at the tournament

Bodie checking the bracketsBodie checking the brackets 

A decade of fundraising for St. Baldrick’s and a year of planning had led to this incredible event, and it felt great to see my idea that once seemed far-fetched become a reality. The energy throughout the school was immense, with kids, parents, coaches, and volunteers all coming together over basketball to fight for the cause. We had families in the stands touched by recent cancer diagnoses and two teams supporting Luke’s Army, another St. Baldrick’s fundraising powerhouse. Many people were so moved by the kindness of the fundraiser that they donated at the door, and we raised $500 more that way.

The tournament truly portrayed the basketball frenzy that is March Madness, somewhat flying by the seat of its pants the whole day. I also never expected the strong sense of community that was created by the tournament, and in some ways, I felt like I was having an even bigger impact than when I shaved my head. To have my idea finally come to fruition, and have it create such a community effort for children’s cancer research was truly amazing, and a completely new feeling I had not yet experienced in my journey with St. Baldrick’s.

The tournament has now raised over $10,000, but more importantly, hopefully, sent a ripple effect of good deeds and hope throughout our community.

Support Bodie’s Buckets for St. Baldrick’s by donating here

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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

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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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Childhood Cancer

2022 Ambassador – Meet Natasha, St. Baldrick’s First International Ambassador

by St. Baldrick's Foundation
February 23, 2022

Meet Natasha, a 13-year-old from Uganda, and St. Baldrick’s first International Ambassador.

Natasha in her school uniform.Natasha in her school uniform.

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Research

Research Outcomes: Novel Discoveries

by St. Baldrick's Foundation
February 15, 2022

Scientific research continues at a great pace thanks to your tireless support. Pediatric cancer researchers proceed to make new discoveries and provide hope for children with cancer. See five examples of the many research outcomes you’ve made possible below:

Lab Equipment with text: Research Outcomes

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Childhood Cancer

2022 Ambassador: Meet Rocco – A 5-Year-Old Full of Love, Kindness, and Faith

by St. Baldrick's Foundation
February 7, 2022

His parents told him his blood was sick when he was diagnosed with cancer. Rocco said he was sad, but he wanted to get better so he could donate his blood to help other people. This unselfish kindness and compassion are rare qualities in a five-year-old. But this is Rocco.

Rocco in hospital bed.

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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

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