CureSearch for Children’s Cancer receives $1 million gift from Norcross Family Foundation

Funds to support cutting-edge immunotherapy trial for pediatric high-grade glioma 

Bethesda, MD – February 8, 2020  – CureSearch for Children’s Cancer has received a $1 million gift from the Norcross Family Foundation in support of a first-in-human, phase I/II clinical trial testing an innovative personalized immunotherapy for pediatric high-grade gliomas, the primary cause of death in children with brain tumors.  

The project is funded through a CureSearch Catapult Award granted to pediatric oncologist Elias Sayour, MD, PhD at the University of Florida who will partner with the Pacific Pediatric Neuro-Oncology Consortium to enroll patients at up to 18 different institutions across the U.S. beginning this year. 

Like a flu vaccine, which takes pieces of the flu virus and activates the immune system against them, Dr. Sayour’s technique takes pieces of a tumor’s genetic material and activates the immune system to identify and destroy that tumor. If high-grade glioma, a hard-to-treat tumor type, is responsive to this immunotherapy, the treatment will likely translate to other pediatric and adult solid tumors as well.  

“Dr. Sayour’s preclinical work is extraordinary, and if successful, the implication for treating all solid tumors is nothing short of groundbreaking,” said Kay Koehler, CureSearch President & CEO. “Unfortunately, this is the type of innovative project that often goes unfunded in the current research landscape. We’re thrilled to partner with the Norcross family to fill that funding gap and ensure that all children diagnosed with cancer have safe and effective treatment options.”  

“Our family believes that the work Dr Sayour is doing has the potential to be a real game changer in the progress and treatment of these cancers,” said Gary Norcross, President, Norcross Foundation. “We look forward to seeing the impact that this project will have on so many children and are proud to support this innovative work.” 

“I’m truly humbled and so very lucky to be surrounded by incredible people in the lab, at CureSearch, and within the community by the Norcross Family Foundation,” said Dr. Sayour. “We’re eager to move forward with our trial in this new year and we will work tirelessly to make a difference. Together, I know we will.” 

Dr. Sayour is an assistant professor in the Lillian S. Wells Department of Neurosurgery and the department of pediatrics in the UF College of Medicine, and principal investigator of the RNA Engineering Laboratory within UF’s Preston A. Wells, Jr. Center for Brain Tumor Therapy.  

As part of CureSearch’s growing co-funding model, this $2.5 million Catapult Award project is also supported in part by the Resonance Foundation for Children’s Health, co-founded by Sheri Sobrato Brisson and Eric Brisson, and by the Rally Foundation for Childhood Cancer Research.  

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About CureSearch for Children’s Cancer 

CureSearch for Children’s Cancer, a national nonprofit organization based in Bethesda, MD, works to end childhood cancer by driving targeted and innovative research with measurable results in an accelerated time frame. CureSearch focuses on advancing the strongest research out of the laboratory and into clinical trials and development, where better, less-toxic treatments can quickly help children. 

CureSearch Catapult Awards support high impact, clinic-ready projects as part of an overall research strategy focused on moving new treatments quickly to clinic, reaching patients in need today while potentially changing the standard of care for all patients across the globe. 

For more information, visit curesearch.org, follow CureSearch on Twitter @curesearch or join the conversation on Facebook at  facebook.com/curesearch. 

About Pediatric Brain Tumors and High-Grade Gliomas 

Brain tumors are the most common cause of pediatric cancer death. Gliomas originate from glial cells which support and nourish neurons in the brain and are classified as either low-grade or high-grade based on how likely they are to grow and spread. Low-grade gliomas usually are slow growing and stay in a local area of the brain. High-grade gliomas grow and spread aggressively and are the primary cause of death in children with brain tumors. Median survival in high-grade glioma is less than two years. 

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Alex Johnson was a happy-go-lucky 6-year-old boy who never had any health problems, so when he started experiencing back pain and a sore throat in 2012, his mother knew something was wrong. 

“Our doctor checked for strep and influenza, and they both came back negative,” Jamie Johnson, Alex’s mother, explained. “We headed home while the lab ran the results thinking it wasn’t anything major. The nurse then called and said they needed to see us immediately.” 

Lab tests showed that Alex’s white blood cell count was 63,000 – the normal range is 5,000 to 13,000. He had leukemia.  

“I told the doctor there must be some mistake and to run the blood again. He said they ran it three times,” said Jamie. “The doctor told us to go home, pack our bags and head to Children’s Hospital in Omaha, which is three hours away from our small town.  We didn’t realize that we wouldn’t be returning home with Alex for a whole month.” 

Alex was diagnosed with high-risk, T-cell acute lymphoblastic leukemia (ALL), an aggressive form of blood cancer. The cancer was moving fast. By the next day, his white blood cell count was up to 90,000.  

“Alex began chemotherapy right away,” said Jamie. “He endured eight months of harsh chemo, about 20 spinal taps, numerous blood and platelet transfusions, and cranial radiation.”  

After more than three years, he completed his treatment in May of 2015. Alex is now 17 years old, a junior in high school with a 4.0 GPA, and is heavily involved in student organizations. Although he is cancer free, he still suffers from some neuropathy – a side effect from chemotherapy. 

Most childhood cancer survivors experience a lifetime of chronic health challenges or even secondary cancers due to the toxic treatments used to save their lives. CureSearch for Children’s Cancer is accelerating the development of safer, more effective treatments for children like Alex. 

“I first learned of CureSearch because the name was on our treatment plans that detailed the various drugs he would be taking,” said Jamie. “We looked into CureSearch and loved how most of the funding went straight to research.” 

In 2013, the family began participating in the annual CureSearch Walk, an event that honors and remembers those affected by cancer, and supports the development of new treatments. Their team, “The A Team,” was the top fundraising team in the nation for the 2022 CureSearch Walk, raising more than $10,000 for next-generation research. To date, they have raised more than $140,000. 

“If you saw Alex today, you would never guess all that he endured,” said Jamie. “We feel that every child deserves a future and want to help give back for other children like Alex. That’s why we support CureSearch. 

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CureSearch for Children’s Cancer has launched Requests for Applications (RFA) for high-impact osteosarcoma translational research, with a focus on moving quickly toward improvements in outcomes for patients.

Projects can be investigator-initiated, intervention-oriented studies or translational research to create new therapeutic options.

The total award amount is $1.5 million, which will be distributed in the amount of $500,000 per year, over a three-year period. We are better together and therefore, we’re very excited to partner with St. Baldrick’s Foundation, Battle Osteosarcoma, Children’s Cancer Research Fund, The Osteosarcoma Collaborative, and April and Michael Egge on this shared mission to cure pediatric osteosarcoma.

Please circulate this information to others who may be interested, and let us know if you have further questions.

Apply today at https://proposalcentral.com/. Letters of Intent are to be submitted by December 9, 2022, 5:00 PM ET through ProposalCentral. You can also review the full RFA in ProposalCentral for eligibility and application information. Click here for instructions on how to create a new ProposalCentral account

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CureSearch for Children’s Cancer has launched Requests for Applications (RFA) for high-impact osteosarcoma translational research, with a focus on moving quickly toward improvements in outcomes for patients.

Projects can be investigator-initiated, intervention-oriented studies or translational research to create new therapeutic options.

The total award amount is $1.5 million, which will be distributed in the amount of $500,000 per year, over a three-year period.

Letters of Intent are to be submitted by December 9, 2022, 5:00 PM ET through ProposalCentral. You can also review the full RFA in ProposalCentral for eligibility and application information. Click here for instructions on how to create a new ProposalCentral account

CureSearch is proud to partner with St. Baldrick’s Foundation, Battle Osteosarcoma, Children’s Cancer Research Fund, The Osteosarcoma Collaborative, and April and Michael Egge on this shared mission to cure pediatric osteosarcoma. Apply today at https://proposalcentral.com/.

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In November of 2020, Shannon Marshall heard the heartbreaking words that more than 15,000 families in the US hear every year, “Your child has cancer.” 

Her son Caden was diagnosed with B-cell leukemia. At just 10 years old, he spent weeks in the hospital enduring toxic chemotherapy. At one point, he was getting the highest dose of methotrexate and had to be monitored around the clock.  

“The side effects were grueling,” Shannon explained. “I had to watch my little boy suffer from nausea, extreme fatigue, clumsiness and hair loss.  

They also grappled with emotional side effects, like Caden’s realization that he could no longer play the sports that he loved. 

“Despite the harsh treatments, Caden remained the same little boy l know and love,” said Shannon. “He would always say, It’s fine mom. We’ll get through this.”  

Caden is now 12 years old and was honored at the 2021 CureSearch Walk, along with other cancer heroes. It was at this event that Shannon learned only about 4% of federal cancer research funding goes to pediatric cancer.  

“This is why we support CureSearch. They’re funding next-generation research that’s on a path to quickly becoming a new treatment for kids with cancer, and offering hope to families like ours,” she said.  

CureSearch for Children’s Cancer is accelerating the development of new, safer treatments for kids with cancer. In fact, CureSearch’s preclinical projects are seven times more likely to advance to clinical trials. 

You can help bring safe, effective treatments to children like Caden this holiday season. Click here to make a lifesaving donation today – because kids with cancer can’t wait.

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Kevin Record takes cycling to another level. He’s tackled seven ultimate adventures to date, including biking across the United States three times and Europe twice. For his latest adventure, Kevin felt compelled to add meaning to his miles by biking across Ireland and Iceland in honor of his student, Marshall Fisher, who passed away in 2018 from osteosarcoma. 

“Marshall was a student at Leon High School where I’m the tennis coach and journalism teacher.” said Kevin. “He loved tennis. He was even my honorary tennis coach in the spring of 2018. He is, and always will be, a life-changing inspiration for me.” 

By the end of his journey, Kevin had clocked in close to 2,500 miles and raised more than $4,500 (and counting) for childhood cancer research! 

“I chose Iceland and Ireland because they’re on my bucket list,” said Kevin. “I biked around the entire Ring Road in Iceland in a clockwise direction, then biked the perimeter of Ireland in a counterclockwise direction to represent the circle of life.” 

Kevin’s close friend, Suzanne Jarvis, participates in the CureSearch Ultimate Hike every year, and she inspired him to turn his cycling trip into a CureSearch Gold event. Gold events are unique CureSearch fundraisers started by supporters to raise money for CureSearch’s next-generation research funding. 

“Cancer is a wicked foe. It knows no boundaries and must be stopped, especially when it comes to children,” he said. “We must do everything in our power to conquer this illness. Supporting CureSearch helps the kids directly. I am ALL IN. I hope you will be too.” 

To learn more and create your own CureSearch Gold event, visit http://curesearchevents.org/gold. 

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Every year, childhood cancer advocates across the country hit the trails for CureSearch Ultimate Hikes to help bring new treatments to kids with cancer. Individuals and teams, like Camp Happy Days, trek 20-30 miles to tell children’s cancer to “take a hike!” 

Camp Happy Days is an organization that offers support and encouragement to children diagnosed with cancer and their families through cost-free, year-round camps and other events. In addition, Camp Happy Days offers support programs throughout the year including hospital visits, holiday giveaways, crisis resources, counseling, and financial assistance. 

“A cancer diagnosis affects the whole family, so our goal at Camp Happy Days is to improve the physical, emotional and psychological health of the entire family,” said Cindy Hay Johnson, executive director of Camp Happy Days. “Our programs are unique because they include siblings and are free for the families.” 

These supportive programs are made possible because of dedicated volunteers, many of whom also participate in the CureSearch Ultimate Hike. For the fourth year, team Camp Happy Days will lace up their hiking boots for the 2022 Southeast on the Foothills Trail hike on November 12. This year’s team includes hikers who have survived cancer or lost loved ones to the disease.  

“We hike for them. We hike in support of those who are currently fighting the fight, in celebration of those who have won their battle, and in memory of those who we have lost,” said Debbie Donovan, 17-year Camp Happy Days volunteer and Ultimate Hike Team Captain.  

Camp Happy Days is also a sponsor for the Ultimate Hike and says the event provides a platform to share their mission with others, while supporting next-generation childhood cancer research.  

“The more opportunities we create to educate others about the need for safer, more effective, treatments for children’s cancers, the more we can help CureSearch in their mission,” said Debbie. “The research they help fund has a direct impact on the population we serve through Camp Happy Days.”  

Training is underway for the 2022 Southeast on the Foothills Trail Ultimate Hike. Click here to sign up for an upcoming information session to learn more.

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Dr. Geoffrey Kannan has always known he wanted to be a physician-scientist. After his first laboratory experience in high school, he was dedicated to learning more about innovations in science that could impact patients’ lives. 

“As soon as I stepped on the pediatric ward in medical school at the University of Miami, I knew that I was destined not only for oncology, but pediatric oncology. It’s been such a rewarding decision,” said Dr. Kannan. 

Dr. Kannan is a pediatric neuro-oncologist by training, and a senior medical director and oncology team lead for the Americas at Labcorp Drug Development. He serves as a medical monitor in a wide variety of industry sponsored trials and is a subject matter expert in pediatric oncology.  

Today, the overall survival rate for childhood cancer is more than 85%, but for many more rare childhood cancers the survival rate remains much lower. True progress requires input from experts in science and industry. Dr. Kannan serves on the CureSearch Industry Advisory Council (IAC), championing CureSearch programs and reviewing research projects for drug development potential. 

Dr. Kannan says that CureSearch’s collaborative groups, like the IAC, are integral in making a longterm impact for childhood cancer patients across the country. 

“CureSearch has achieved the goal of getting the necessary people sitting together. We must continue to work to balance all perspectives and always listen for the needs of the patient,” said Dr. Kannan. “I believe that CureSearch, and the people who make up its beating heart, is uniquely situated to lead in the care of our patients.” 

Dr. Kannan plays a critical role in helping us change the landscape of pediatric oncology, also helping plan the CureSearch Pediatric Early Development Symposium and CureSearch Summit. We are very grateful to have Dr. Kannan’s support of all of CureSearch’s work. 

To learn more about the IAC, visit https://curesearch.org/advisory-councils.  

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Parexel, one of the world’s leading global clinical research organizations and a CureSearch Industry Advisory Council member, is sponsoring the 2022 My CureSearch Walk to honor and remember those affected by cancer. Formerly the National Walk, My CureSearch Walk gives supporters like you the chance to walk from anywhere, anytime during September in honor of Childhood Cancer Awareness Month.  

Parexel helps life sciences and biopharmaceutical companies transform scientific discoveries into new treatments that will ultimately benefit the patients who need them most. They don’t just focus on the patient. They focus on the person.  

“Beyond searching for medical answers and treatments, patients are people first and so much more than their healthcare needs,” said Clare Grace, Chief Patient Officer at Parexel. “The more we can understand our patients around the world, the more passionate we can all become about embedding empathy into the framework of everything that we do.” 

One example of how Parexel is embedding the patient voice into clinical trial design is by appointing its first Patient Ambassador – Stacy Hurt. She offers unique perspectives, both as a patient and a caregiver. Stacey’s son, Emmett, suffers from a disease so rare, it doesn’t even have a name. Now a teenager, he is still unable to walk, talk, stand up or care for himself. In addition, Stacey was diagnosed with an aggressive stage IV colorectal cancer that metastasized into 27 other places throughout her body. While her prognosis was bleak — an 8% five-year survival rate – in 2015, she was declared cancer free after 55 chemotherapies, 20 PET scans, chronic nausea and neuropathy, radiation sessions and two surgeries. 

“When I was approached to be a Patient Ambassador, I was so excited that a company was investing in a patient-oriented role,” said Stacey. “I have been very vocal about the need for patients and caregivers to be on the inside of an organization and help build clinical research from the inside out. Parexel gives me the opportunity to do just that.” 

Today, in her Patient Ambassador role, Stacy helps guide the design and delivery of patient-centric clinical trials from inside the organization.  

Click here to read Stacey’s story.  

CureSearch will also host in-person walks in Denver, Charlottesville, the Twin Cities, Salt Lake City and Omaha. Visit curesearchwalk.org to register, join a team, or organize a Walk event in your own community!   

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As a pediatric emergency medicine physician, Kim Giusto is no stranger to the symptoms of acute lymphoblastic leukemia (ALL), an aggressive form of blood cancer, in children. In 2013, her professional life became her personal life. She noticed her son, Cole, had been sick for five days with cold symptoms, a fever, and a rash known as petechiae. 

“I also noticed he had gained some weight and was breathing a little fast, which concerned me that something more serious was going on,” said Kim. “I brought him to the hospital where I work and my boss at the time took care of him.”  

Tests showed that Cole’s blood cell lines were abnormal. Although Kim knew this was a concern for leukemia, she and her husband remained hopeful.   

“As results started to come back, I was hopeful it was something infectious,” said Kim “But the moment my boss walked in, I could see he had been crying. I screamed. I will never forget that moment.” 

In February of 2013, at only 20 months old, Cole was diagnosed with T-cell ALL, an aggressive form of ALL. Cole displayed incredible strength during more than three years of toxic chemotherapy treatments.  

“Cole was a warrior through his treatments. They called him the mayor. He would walk onto the chemo unit with sunglasses, a hat, and confidence at three years old,” said Kim. “It’s like a roller coaster ride. You have your ups and downs. Even if things are going the way they should, it’s sometimes hard to see the light at the end of the tunnel but you push through, because you have to.” 

The majority of the children who survive cancer will develop chronic health conditions including secondary cancers, severe musculoskeletal problems and cardiovascular disease, due to the toxic treatments used to save their lives.  

“As we move towards improved survival rates for ALL and other pediatric cancers, my hope is that we can lessen the side effects related to cancer treatments and develop new treatments for less common pediatric cancers,” said Kim. 

“When I was three-years-old, my parents and I did the CureSearch Walk and our team was called Cole’s Crew,” he said. “It’s important to me to support the CureSearch mission because we need to end the misery that so many young kids like me go through when they’re diagnosed with cancer.”  

With support from generous donors, advocates and volunteers who participate in fundraising events, CureSearch is funding groundbreaking research and accelerating the development of safer, more effective treatments for kids like Cole, who is now 11-years-old and cancer free. 

Cole has continued to be an advocate for childhood cancer, and is becoming more involved in fundraising and bringing awareness to the urgent need for new pediatric cancer research.  

CureSearch has adapted a strong co-funding model and partners with other childhood cancer foundations to fund projects that are working to develop new therapies for hard-to-treat tumors like ALL.  

With funding from a CureSearch Young Investigator Award, Dr. Loretta Li of Lurie Children’s Hospital / Northwestern University studies a high-risk subtype of B-cell ALL, which is dependent on the JAK2 protein, but resistant to classic JAK2 inhibitors. Her lab is developing new compounds that can overcome resistance to ruxolitinib, a therapy with demonstrated clinical safety for use in children with relapsed/refractory cancers that harbor the JAK2 mutation.  

September is Childhood Cancer Awareness Month. You can make an impact and support the development of new treatments for kids with cancer and give them a chance at long, healthy life. Make a gift today and help fund next-generation research: https://give.curesearch.org/ccam. 

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Ultimate Hiker takes on famous pilgrimage for childhood cancer research 

How far would you hike for children with cancer? For Steve Hay, it’s 165 miles.  

More than 17,000 children in the US are diagnosed with cancer every year and most current standard treatments were approved before 1990. There is an urgent need for new, safe, effective treatments. 

Through the CureSearch Create Your Own Adventure program, Steve went the extra mile – 165 miles to be exact – to raise funds for the development of new treatments for children with cancer. This was Steve’s first CureSearch fundraising initiative and he was honored to hike in memory of Colton Kopcinski. 

“I was the family’s pastor and followed their journey from Colton’s diagnosis to his death,” said Steve. “He was such an energetic, funny, smart young guy that you wanted to be with him. Such a positive attitude even when in severe pain. His mom is involved with CureSearch and if she thinks you all are the best way to give hope to other families, that’s good enough for me.” 

In May, Steve began his ultimate adventure on the El Camino de Santiago, or The Way of Saint James trail in Spain. According to exploreworldwide.com, walking the Camino de Santiago is one of the most highly-sought pilgrimages in the history of humanity. Today, nearly 350,000 trekkers from around the world complete the Camino each year.  

“These are pilgrimage trails dating back to the 900s. What makes it spiritual is both the inward exploration and the outward benefit to others,” said Steve. “I want to benefit the children who have done nothing to deserve the suffering they experience.”  

El Camino de Santiago is a network of many different routes with their own unique history, heritage and charm. Steve began his pilgrimage by hiking 75 miles on the Camino Ingles trail and was joined by Alex Felice, his daughter’s boyfriend. Alex joined him on the trail to raise funds and awareness for childhood cancer research and helped Steve surpass the $5,000 fundraising goal. 

Next, Steve hiked 75 miles on the Camino San Salvador and wrapped up his journey hiking 30 miles on the Camino Primitivo. He said his first experience being involved with CureSearch has been positive and inspiring.  

“In the long term I hope that research can nearly eliminate childhood deaths, increase the quality of life for survivors, and shorten the length and minimize the suffering that happens during treatment.” 

To learn more about the Ultimate Hike program and how you can create your own hiking adventure, visit http://ultimatehike.org/.  

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Volunteer, mother of childhood cancer survivor to host Northern Colorado CureSearch Walk 

CureSearch funds next-generation childhood cancer research, and that wouldn’t be possible without our dedicated volunteers who work every day to fundraise and bring awareness to the urgent need for new treatments for the kids who need them most.  

In 2018, Kathleen Sullivan and her family’s world turned upside down. Her 17-year-old daughter, Sherilyn, was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the blood that starts in the bone marrow and spreads to the bloodstream. Kathleen had to watch her healthy, energetic child endure toxic treatments to save her life.  

Although childhood cancer is considered a rare disease, it’s the most common cause of death by disease in children. 

“During my daughter’s treatment, we learned that she was 1 of 5 seniors in her class diagnosed with cancer that year,” said Kathleen. “ONE OF FIVE. Childhood cancer was feeling less and less rare.” 

While Sherilyn had a significant chance of survival, that’s not the case for many children with less common and more aggressive tumor types. 

“The need in Northern Colorado to bring awareness and funding for research was increasingly apparent,” said Kathleen. “I have met too many families who have angel children instead of survivors and I still couldn’t shake my grief for those who still do not have options.” 

Our CureSearch Walks are annual events where supporters, advocates and survivors come together to honor and remember those affected by childhood cancer, and raise funds for next-generation research. In addition to CureSearch-hosted walks, supporters also have the opportunity to organize walks in their own communities.  

Kathleen and her family are hosting the Northern Colorado CureSearch Walk on September 24 in Loveland, CO. They’re hoping to raise $10,000 for childhood cancer research.  

“If we can find options for children with leukemia, there are options for all the other subtypes of childhood cancer,” said Kathleen. “But it will take awareness, funding and research. I want people to come walk for the fighters, celebrate our survivors and remember our angels.” 

Click here to join a team or donate to the Northern Colorado CureSearch Walk.   

Interested in participating in a CureSearch Walk this year? Visit our website to sign up for a Walk near you, organize your own local event, or participate in My CureSearch Walk. Formerly the National CureSearch Walk, My CureSearch Walk allows you to walk anywhere, anytime during the month of September, Childhood Cancer Awareness Month. http://www.curesearchwalk.org/. 

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Volunteer and mother of childhood cancer survivor to host Northern Colorado CureSearch Walk  

CureSearch funds next-generation childhood cancer research, and that wouldn’t be possible without our dedicated volunteers who work every day to fundraise and bring awareness to the urgent need for new treatments for the kids who need them most.  

In 2018, Kathleen Sullivan and her family’s world turned upside down. Her 17-year-old daughter, Sherilyn, was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the blood that starts in the bone marrow and spreads to the bloodstream. Kathleen had to watch her healthy, energetic child endure toxic treatments to save her life.  

Although childhood cancer is considered a rare disease, it’s the most common cause of death by disease in children. 

“During my daughter’s treatment, we learned that she was 1 of 5 seniors in her class diagnosed with cancer that year,” said Kathleen. “ONE OF FIVE. Childhood cancer was feeling less and less rare.” 

While Sherilyn had a significant chance of survival, that’s not the case for many children with less common and more aggressive tumor types. 

“The need in Northern Colorado to bring awareness and funding for research was increasingly apparent,” said Kathleen. “I have met too many families who have angel children instead of survivors and I still couldn’t shake my grief for those who still do not have options.” 

Our CureSearch Walks are annual events where supporters, advocates and survivors come together to honor and remember those affected by childhood cancer, and raise funds for next-generation research. In addition to CureSearch-hosted walks, supporters also have the opportunity to organize walks in their own communities.  

Kathleen and her family are hosting the Northern Colorado CureSearch Walk on September 24 in Loveland, CO. They’re hoping to raise $10,000 for childhood cancer research.  

“If we can find options for children with leukemia, there are options for all the other subtypes of childhood cancer,” said Kathleen. “But it will take awareness, funding and research. I want people to come walk for the fighters, celebrate our survivors and remember our angels.” 

Click here to join a team or donate to the Northern Colorado CureSearch Walk.   

Interested in participating in a CureSearch Walk this year? Visit our website to sign up for a Walk near you, organize your own local event, or participate in My CureSearch Walk. Formerly the National CureSearch Walk, My CureSearch Walk allows you to walk anywhere, anytime during the month of September, Childhood Cancer Awareness Month. http://www.curesearchwalk.org/. 

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Survival rates for the most common types of childhood cancer have greatly increased in recent years, but unfortunately, there has been little improvement in the prognosis for many less common and more aggressive tumor types. That’s why at CureSearch, we’re focused on the development of new, safe, effective treatments for the most difficult-to-treat pediatric cancers with the lowest survival rates.  

We’re not just funding research. We’re funding impactful research. If a project isn’t on an accelerated path to new drug development, we don’t fund it. 

The CureSearch Scientific Advisory Council (SAC), which includes best-in-class pediatric oncologists, sets the academic priorities for research initiatives and evaluates projects on scientific merit. Brenda Weigel, MD, of the University of Minnesota’s Masonic Cancer Center serves as the SAC chair and helps ensure that CureSearch’s funding and strategic initiatives are focused on the mission of the organization. 

Dr. Weigel is the director of the Division of Pediatric Hematology/Oncology and is a professor cross-appointed at the University of Minnesota’s Masonic Cancer Center and the Department of Pediatrics. She conducted her residency in pediatrics at the University of Western Ontario. During her pediatric residency, she noticed the pediatric oncologists applied a scientific approach to patient care.  

“In pediatric oncology, I found the perfect marriage of comprehensive medical care and cutting-edge research that truly could change lives,” she said.  

Dr. Weigel’s research focuses on advancing new therapies that have a role in fighting cancer in children. She says one of the biggest challenges in developing those new therapies is the small number of patients available to study multiple possible treatment options.  There is also a need for more research in pediatric tumor models to identify targets for therapy development. 

“In order to advance the field of pediatric cancer drug development, the private and public sectors must work together,” said Dr. Weigel. “CureSearch is a unique organization that brings together all the key stakeholders including academia, industry, and regulatory experts, to set the priorities for funding.” 

In doing so, CureSearch hosts collaborative events such as the Pediatric Early Development Symposium (PEDS). Dr. Weigel is the co-chair of the annual event that brings together industry, academia and regulatory leaders to examine the dynamic nature of clinical trials for children with cancer. This year’s symposium will explore global technological efforts to improve clinical trial design and implementation.  

Dr. Weigel says that CureSearch is playing a leading role in sustaining a collaborative environment, as well as supporting impactful, next-generation research projects, all of which are necessary for real progress in the field. 

“We are in a period of immense promise for the development of new cancer therapies for children, but with this promise arise inherent challenges,” she said. “Working together to gain a greater understanding of how to address these challenges and sharing information will allow us to develop, evolve, and implement strategies that not only meet regulatory requirements, but truly advance the care of children with cancer.” 

To learn more about the SAC and its members, visit https://curesearch.org/advisory-councils.  

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Mom and childhood cancer advocate shares daughter’s story on anniversary of diagnosis 

Fourteen years ago today, Stacy Distefano heard the words that more than 17,000 parents in the U.S. hear every year – “your child has cancer.”  

On April 29, 2008, Stacy took her four-year-old daughter, Avery, to the pediatrician after weeks of stomach problems and complaints of a headache. Bloodwork showed that she was dehydrated, so Avery was sent to the ER for IV fluids.  

“The ER doctor ordered an MRI just to be safe,” said Stacy. “There’s no way I could’ve ever been prepared for what followed.”  

Three Unthinkable Options  

The MRI revealed the source of Avery’s stomach problems and headaches – a tumor the size of a walnut, located on the brain stem. She was diagnosed with medulloblastoma, the most common malignant brain tumor in children. It is a fast-growing tumor that begins in the lower back part of the brain and can spread to other parts of the body.  

The family was sent to the pediatric ICU at Children’s Hospital of Philadelphia (CHOP). 

“The doctor explained that there were three options for the tumor,” said Stacy. “The first was that the MRI will show the tumor is non-cancerous and they will remove it. The second was that it would be cancerous, but contained and removable. And the third, the tumor will have divided and spread down her spine. All three options were unthinkable to me.” 

Despite this devastating prognosis, Avery continued to put on a brave face, even comforting her mother. In a blog entry from that day, Stacy expressed that Avery was “being very brave, and keeps saying “don’t cry mommy, I’m feeling better.”  

That night, she spent hours watching Avery sleep. 

An Untreatable Cancer  

On August 2, 2008, oncologists presented the results of Avery’s latest MRI. The tumor had regenerated and “mushroomed,” filling in every possible space in Avery’s brain, and the cancer had developed a resistance to chemotherapy. Doctors warned that continuing chemotherapy would shorten her life span, and put her at risk for infection and other side effects from which she would never recover.  

The family was advised to take Avery home and make arrangements with hospice care. In a blog post from Saturday, August 4, Stacy describes how she was anxious to go home, but leaving CHOP felt like the beginning of the end. She kept herself in the room to avoid facing other families and nurses that they had grown so close to. Once again, Avery brought her a moment of comfort when she needed it most:  

“About 2am, I woke up to take Avery to the bathroom. When we got settled back in bed, she looked up at me and said ‘don’t worry mommy, when it’s morning time, I promise I’m going to open my eyes and wake up.’ For some reason, I found peace in that and believed her. How could a 4-year-old girl possibly come up with that sentence? She is a most amazing child and it makes it all that much harder to face losing her.” 

On August 7, 2008, Avery’s condition worsened. She had difficulty breathing and trouble swallowing, which made it nearly impossible to take most of her medication. 

“Thank you, mommy” 

Avery continued to struggle into the next morning. Despite the challenges of the day, Stacy was able to still see glimpses of her daughter. Not a child diagnosed with cancer, but just her beautiful daughter, Avery:  

“Earlier today when I was rocking her, she kissed my shoulder. Later in the day, she twirled my hair for a few seconds and best of all, around dinner time after she had gotten sick, she opened her eyes and said clearly, ‘Thank you, mommy.’ These are three moments in my life I will never ever forget.” 

At 6:45 am on August 8, 2008, Avery died in her mother’s arms, while holding her TigerBear. 

Sadly, Avery’s story is one experienced by many childhood cancer patients with hard-to-treat tumors, which is why Stacy is a dedicated advocate for advancing research and drug development for pediatric cancers. When she was told that Avery’s cancer could not be cured, she asked Dr. Peter Phillips, one of her doctor’s at CHOP, if studying the cancer would benefit any research currently being done. He said yes. 

Avery’s tumor was examined post-mortem in a study that appeared in the New England Journal of Medicine, which was possible in part due to Avery’s tumor sample.  

“Rather than just a statistic, Avery is a permanent rung on the ladder to the cure,” Stacy said.” “For me, it’s one small way I know Avery is still having an impact on this world.”  

This summer, Stacy is planning to host a fundraising event to support childhood cancer research projects that are funded by CureSearch for Children’s Cancer.  

The CureSearch Impact 

CureSearch is accelerating the development of safe, effective treatments for kids like Avery by funding promising research led by innovative investigators around the globe.  

We’ve adapted a strong co-funding model and partnered with other childhood cancer foundations, to fund projects that are working to develop new therapies for hard-to-treat tumors.  

In addition, we collaborate with leaders from FDA, pharmaceutical and biotechnology companies, and clinical research organizations to evaluate proposed research projects for scientific merit, clinical feasibility and commercialization potential.   

With funding from a CureSearch Young Investigator award, Francesca Nazio, PhD, of the Bambino Gesù Children’s Hospital is studying a safer and more effective treatment approach for medulloblastoma. Her project aims to enhance the immune system’s natural ability to fight cancer to treat medulloblastoma, with the goal of disrupting a process in medulloblastoma cells that not only promotes their survival but also enables them to escape anti-tumor immune responses.  

Research projects like this wouldn’t be possible without the support from generous donors who share our mission to end childhood cancer. To learn more about how you can support next-generation research, visit https://curesearch.org/donate-to-childrens-cancer-research. 

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Ultimate Hiker raises $200,000 for childhood cancer research

A Knoxville, TN news station, WBIR, recently spoke with Frank Gioscia, an Ultimate Hike participant who has raised more than $200,000 for childhood cancer research since 2010. 

What started as a hobby quickly turned into a life-changing mission. There isn’t a hike he doesn’t like. He said that he is currently going through all the trails in the Great Smoky Mountains for the twelfth time. 

“I think if you’re 80 years old, or 75 years old, and if you had cancer, you lived a lot of life, but when you’re just 4 or 5 years old, you haven’t even gotten started yet,” Gioscia said in his interview. “I think that’s where we’ve got to raise money to help these kids have a full life. That’s important.” 

“He is a wonderful, giving, generous man that we are honored to have as part of our program,” said Jennifer Murphy, the national director of campaign development for CureSearch. “Our mission is to drive targeted and innovative research in an accelerated timeframe with measurable results for children’s cancer.” 

Watch the full story from WBIR!  

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FOR IMMEDIATE RELEASE 
Contact: Margetta Thomas, Communications Manager 
margetta.thomas@curesearch.org  

Tina Swallow and Sam Blackman join CureSearch Board of Directors 

Bethesda, Md. – February 7, 2022 – CureSearch for Children’s Cancer announced today the appointment of Tina Swallow, a leader in the cyber security industry, and Samuel C. Blackman, MD, PhD, a leader in the pediatric oncology drug development community, to its Board of Directors.  

Ms. Swallow and Dr. Blackman will work to advance CureSearch’s mission to end childhood cancer, and accelerate the development of safe, effective treatments.  

Ms. Swallow currently serves as the sales director for the Department of Defense and Intelligence Community at Trellix. In her role, she partners with a team of professionals that provide her customers with critical leading edge cyber security solutions. She also served in the Navy as the commanding officer of US Naval Computer and Telecommunications Station Far East where she supported Indo-Pacific and Central Command Combatant Command Operations, leading nine Navy and Marine Corps communications network detachments across Guam, Japan, Korea, Singapore and Diego Garcia.  

Ms. Swallow is also the mother of a childhood cancer survivor, and has been a supporter and fundraiser for CureSearch since 2010. In 2020, she was named the National Woman of the Year by the Leukemia and Lymphoma Society for her fundraising efforts.  

“Tina has a strong passion for supporting childhood cancer research and understands the challenges facing patients and families today,” said Kay Koehler, president and CEO of CureSearch. “That passion, combined with her strong leadership, volunteer, fundraising and technology experience, makes Tina an incredible asset to our board and the children we serve.”  

Dr. Blackman, a physician-scientist trained in pediatric hematology/oncology and neuro-oncology, is the cofounder and chief medical officer of Day One Biopharmaceuticals. Prior to founding Day One, Dr. Blackman was head of clinical development at Mavupharma, where he led the advancement of a novel immunotherapeutic towards Phase 1 clinical trials. He has also led the early clinical development of more than 10 novel cancer therapeutics.  

In addition, Dr. Blackman previously served as an ad hoc Board member while he chaired the CureSearch Industry Advisory Council (IAC), which reviews potential research projects for clinical, commercial and regulatory feasibility. He also co-chaired the inaugural CureSearch Pediatric Early Development Symposium (PEDS) in 2020 and helped devise organizational strategy in convening industry and academia to drive new drug development.  

“Sam has made significant contributions to the CureSearch mission during his time as chair of the IAC and we’re grateful that he will continue his commitment to bringing children to the forefront of drug development,” said Jared Brancazio, chair of the CureSearch Board of Directors and vice president of investments at Brancazio Wealth Management of Raymond James. 

To learn more about CureSearch’s Board of Directors, visit curesearch.org/board-of-directors. 
  

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About CureSearch for Children’s Cancer 
CureSearch for Children’s Cancer, a national nonprofit organization based in Bethesda, Md., works to end childhood cancer by driving targeted and innovative research with measurable results in an accelerated time frame. CureSearch focuses on advancing the strongest research out of the laboratory and into clinical trials and development, where better, less-toxic treatments can quickly help children. To learn more visit curesearch.org. 

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