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Funding innovative stem cell and gene therapy research for childhood cancer in California

Funding innovative stem cell and gene therapy research for childhood cancer in California

In 2023, The California Institute of Regenerative Medicine (CIRM) used ACCO’s toolkits and social media frames for ACCO’s #GoGold campaign to spread awareness of childhood cancer and research that is being conducted at their facility. Their investments are over $20 million for childhood cancer brain tumor research at Stanford and City of Hope. As ACCO reached out to discuss CIRM’s #GoGold campaign, we wanted them to highlight their childhood cancer brain tumor research. Here is their article.

Leo David Wang, MD, PhD (left) | Photo: Courtesy City of Hope

Cancer remains the number one cause of death by disease for children in America. Every three minutes a child is diagnosed with cancer worldwide and approximately 40,000 children are receiving cancer treatment at any given time. 

Childhood cancer survivors often experience many side effects including secondary cancers, heart damage, infertility, chronic hepatitis, and more.

The California Institute for Regenerative Medicine (CIRM) is committed to continue funding innovative stem cell and gene therapy research for childhood cancer to provide more treatment options to children affected by the disease.

About the California Institute for Regenerative Medicine (CIRM)

CIRM was founded in 2004 when 59% of California voters approved Proposition 71: the California Stem Cell Research and Cures Initiative. That initiative provided CIRM with $3 billion to fund stem cell research in the state. 

In 2020, California voters approved to continue funding CIRM through the passage of Proposition 14: The California Stem Cell Research, Treatments, and Cures Initiative of 2020. That vote of confidence provided CIRM with an additional $5.5 billion to continue funding regenerative medicine research and programs in the state.

Since its founding in 2004, CIRM has played a pivotal role in growing the scientific field, creating jobs across California, and fostering advancements that benefit diverse communities. CIRM is proud to have funded more than 100 clinical trials with the aim of accelerating the approval of new therapies for patients. 

Some of those clinical trials address conditions affecting children with cancer. 

Clinical Research Seeking Treatments for Brain Tumors

CIRM is supporting various clinical trials to find treatments for brain tumors, the most common solid tumor of childhood, with roughly 5,000 new diagnoses per year in the United States.

One clinical trial is supported by an $11.9 million award made to the founding director of the Stanford Center for Cancer Cell Therapy, Crystal Mackall, M.D. The trial will be testing a treatment for glioma, a devastating brain tumor that occurs primarily in children and young adults. Glioma tumors are almost always fatal. Until now, radiation therapy has been the main treatment option, but it only extends survival by a few months.  

CIRM also provided $8.4 million in funding to support a Phase 1 clinical trial led by Leo David Wang, MD, PhD at City of Hope Children’s Cancer Center also targeting malignant brain tumors in children. 

Both teams at Stanford and City of Hope Children’s Cancer Center will treat pediatric patients with aggressive brain tumors using CAR-T cell therapy.

CAR-T cell therapy modifies a patient’s own T cells (immune system cells) with a protein called chimeric antigen receptor cell (CAR). These newly created CAR T cells will be reintroduced back into patients where it is hoped they will identify and destroy the brain tumor cells. 

“CAR T cell therapy is usually given intravenously, and then the cells travel through the bloodstream to find the tumor. But the blood-brain barrier separates the blood circulation from the central nervous system — which makes it hard for CAR T cells to access the brain,” Wang explained. “In this trial, we introduce the CAR T cells directly into the ventricles of the brain, which works much more effectively for brain tumors.”

The CIRM-funded research at Stanford and City of Hope Children’s Cancer Center has the potential to transform the landscape for lethal pediatric brain tumors and provide treatment options for children affected by cancer.

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Learn more about the California Institute for Regenerative Medicine at cirm.ca.gov. To explore CIRM-funded clinical trials, visit this page on its website

 

Gold Ribbon Hero: Olivia P.

Meet Olivia, a 14-year-old undifferentiated sarcoma survivor!

Olivia hadn’t been feeling well and ended up at the pediatrician’s office twice the week before her diagnosis. On a Sunday morning, she woke up with the right side of her face swollen. She was taken to urgent care who referred the family to the emergency room. Initially, doctors ruled it out as Temporomandibular Joint dysfunction (TMJ). A nurse came into the room after doctors had cleared out and urged Olivia’s parents to ask for a CT scan so that they could check into the matter further. 

“Not even an hour after the CT, the doctor came back and said ‘let me show you what we have found,’” remembers Rebecca, Olivia’s mother. The family saw Olivia’s tumor for the first time, lodged in her right neck surrounding the carotid artery and inoperable. Olivia was admitted immediately, had an MRI performed and met with a pediatric oncology in the span of a few hours. A biopsy to determine cancer type was performed the next day and initially, doctors thought it was rhabdomyosarcoma. Olivia’s parents asked for another opinion and two more doctors agreed that she had undifferentiated sarcoma. 

According to the National Institute of Health, undifferentiated sarcoma is a type of cancer that forms in the soft tissue but may also form in the bone. 

Treatment started immediately and Olivia went through 36 treatments of proton radiation. She also underwent chemotherapy and another surgery to get the rest of the tumor out, after it had shrunk. As of April 2022, Olivia has consistently shown to have no evidence of disease! 

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

Gold Ribbon Hero: Johnathan M.

Meet Johnathan, a Ewing’s Sarcoma survivor!

Johnathan was an active kid who participated in tennis and basketball who started to suffer from a sore leg. His parents took him to the doctors office for scans, but they refused to check it out. A few months passed and Johnathan collapsed in gym class. He was taken to the emergency room where bloodwork was taken. A local osteopath looked at Johnathan’s labs andordered an MRI immediately. 

“We were in disbelief. We were angry that our pediatricians wouldn’t listen to us. They kept telling us it was a pulled muscle or growing pains,” remembers Stephanie, Johnathan’s mother. 

Once the MRI was completed, Johnathan’s family and medical team arranged a zoom call to go over the results. Images revealed that the tumor was located in his pelvis and mushrooming out of his hip bone. Doctors were sure it was some sort of sarcoma, just not sure what type. A few days later, Johnathan was taken to Boston Children’s to have a PET scan performed.

“Johnathan’s diagnosis came when the world was shutting down due to Covid. Only one parent was allowed in the hospital at a time. Between his Dad and I, we would take turns. If dealing with the after effects of chemo wasn’t enough, he developed a blood clot in his lungs due to Covid.” 

Johnathan spent eight months going through treatment and officially rang the bell in August of 2022. 

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

 

Gold Ribbon Hero: Khloé

Meet Khloé, a stage 4 Sacrococcygeal Teratoma germ cell tumor hero. 

had the stomach flu for two weeks and was complaining of stomach pain. The third time she visited the pediatrician, her mother, Kelly, urged them to get blood tests because she felt that there was more going on. Khloé’s doctor called to let her know that Khloé’s blood counts were off and that she needed to get to Children’s Hospital immediately. Initial ultrasounds didn’t show anything, so a second doctor came in and found a massive tumor. 

“Once my daughter had her ultrasound and doctor informed us of tumor we were in a state of shock and disbelief! More doctors came in to talk with us as I had many questions, but the number one question was Is my daughter going to die? Is the tumor cancerous,” remembers Kelly. 

Khloé’s treatment started immediately after the tumor removal from her abdomen and she underwent two years and eight months of treatment. The tumor ruptured which led to surgeons removing her left ovary and cancer cells from her uterus. In the span of one year, Khloé relapsed three times. She underwent Hyperthermic Intraperitoneal Chemotherapy (HIPEC )Surgery in hopes of applying chemotherapy directly inside her abdomen but it did not work. After an excruciating 12-hour surgery, Khloé spent three days in the intensive care unit and several weeks after in patient. At that point, the cancer had metastasized to Khloé’s lungs and liver. 

Khloé had two autogolous stem cell transplants along with chemotherapy to eliminate the cancer and put her back into remission. Unfortunately this was the last option for Khloé and her family and she was given six months to live. Her family was determined to help her live as long as they could, so they explored other options including holistic medicine. 

“Our beloved and precious Khloé fought for as long as she could, but lost her battle with cancer on August 30, 2022, four months after her 11th birthday.” 

Learn more about Khloé’s tumor here.

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

Gold Ribbon Hero: Ben C.

Meet Ben, a 9-year-old astrocytoma warrior!

At 15 months, Ben started to have seizures which prompted doctors to take a closer look. When he was just 16 months old, Ben had surgery to remove 75% of the tumor from his temporal lobe. “It felt surreal, like a bad nightmare we couldn’t wake up from. There really are no words to describe the pain – just like you don’t know love until your child is born; same with pain. You don’t know pain until your child has cancer” remembers Stephanie, Ben’s mother. 

When Ben was five years old, his cancer began growing again and diffused with his brain stem. He underwent another surgery that was meant to relieve the pressure and during the procedure, he had a stroke leaving him with right side paralysis and partial blindness. Doctors were able to remove 90% of the tumor but the cystic component of the tumor continued to grow which meant that Ben needed to start chemotherapy. 

Ben currently attends five different therapies a week including chiropractic appointments and acupuncture to help with side effects. He’s had to retrain his brain to remember he has a right side and how to use it. Ben still cannot move his write or wiggle his fingers which prevents him from doing normal kid things like playing at a park or climbing trees. 

ACCO spoke to Stephanie, Ben’s mother, in late April and gave the latest update on Ben: “Ben’s last scan showed almost no tumor and we have moved to scans every 6 months. This is a huge victory with brain cancer. He’s not been on chemo for 1 year.” 

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

Steven ‘the Cancer Crusher’ Cooks with Gordon Ramsay!

Four years ago, the ACCO staff reached out to Gordon Ramsay to extend heartfelt birthday wishes to Steven, fondly known as the ‘Cancer Crusher.’ Prompted by this email, Ramsay not only sent Steven a personal video, but also issued a playful challenge: a ‘chicken-parmesan’ cook-off. Steven eagerly anticipated the chance to meet and cook alongside his idol.

However, various hurdles, including the pandemic and scheduling conflicts, derailed their plans for four long years. Finally, this past weekend marks the long-awaited rendezvous between Steven and Gordon, an event ACCO wouldn’t miss for anything.

Contrary to the original plan of meeting in Las Vegas, the meeting took place at Foxwoods in Connecticut, accompanied by Steven’s mother and the ACCO staff. The itinerary included: a behind-the-scenes tour of the ‘back of house’ behind ‘Hell’s Kitchen,’ an exclusive meet-and-greet with Gordon Ramsay, attend a ‘Hell’s Kitchen’ taping during dinner service, and, of course, the chicken parmesan cook-off.

During the pandemic, Steven launched “Chemo Bites,” a video series featuring his cooking lessons and recipes. This endeavor, which resembled a genuine television show, gained popularity and caught Gordon Ramsay’s attention. Through his cooking, Steven fostered community spirit, and the series remains available on the ACCO website.

In 2020, Steven was hailed as a Gold Ribbon Hero and shared his battle with acute lymphoblastic leukemia (ALL). His journey began with frequent bruising and nosebleeds, leading to an ALL diagnosis on his 10th birthday. “I felt my gut instinct was right,” recalled Wendy, Steven’s mother.

Despite facing near-death experiences during treatment, Steven emerged resilient. He now channels his energy into advocacy, hosting blood drives, fundraising, and sharing his story at various events. His mantra of perseverance and positivity continues to inspire others.

Watch below as Steven battles Chef Gordon Ramsay in an epic Chicken Parmesan Battle!

 

Gold Ribbon Hero: Zoey

Meet Zoey, an 8-year-old ganglioneuroma survivor!

Zoey’s tumor was found quite by accident. Initially, she had gone to the doctor for a bad cough which led to an x-ray. Zoey was misdiagnosed with pneumonia and after two weeks, her doctor took another look. At that point, the tumor was found and Zoey spent 9 days in the hospital. Surgery took 8 hours to complete and doctors removed 80% of the tumor. The remaining 20% was left in her spine and too close for removal. 

“When Zoey was diagnosed, it was a complete shock as she was a healthy 3-year-old” remembers Susan, Zoey’s mom.

Zoey’s tumor is located in her spine and was too close for removal so the team tried two rounds of chemotherapy first. After the tumor didn’t respond, the team continued to keep an eye on it through scans every six months. During her treatment, she encountered many doctors who were quick to start one treatment rather than taking time to assess all avenues of treatment. Her parents decided to take her to specialty doctors instead. 

“She handled everything with a smile and took to learning about her cancer and treatment. She has become knowledgeable about what she’s going through and loves to play doctor with her medical play kit she received from ACCO.” 

ACCO spoke to Zoey’s mother, Susan in late April 2024 who provided us with this update: “Zoey’s treatment is going good. She had surgery and chemo back in 2020 and now we monitor it. 20% is left but it is in her spine so they are not touching that. We see a neurologist every 6 months and she has tests ran. So far, so good. Her tumor does press on her spinal cord and the free flowing fluid but you would not know it.  She is a happy, adventure-seeking 8-year-old how loves participating in gymnastics, trampoline and swimming.” 

 

Gold Ribbon Hero: Justin P.

Meet Justin, a stage 3 acute lymphoblastic leukemia hero.

One week before Justin’s 12th birthday, Justin was diagnosed with cancer. He had complained of chest pains and was taken to urgent care. After a chest x-ray was performed, the family was told to go to Stanford Children’s Hospital for additional testing. 

He relapsed in 2017 but still continued with his chemotherapy treatments. A bone marrow transplant was no longer available. The last few months of Justin’s life were ‘extremely challenging’ because of long-term side effects. He suffered with mobility issues and loss of kidney function. 

His mother fondly remembers Justin by saying, “warriors are not born; they are forged through adversity and hardship. Justin’s name means ‘righteous, just, fair. Since the day he was diagnosed, he lived up to his name. He was loved by all he came in contact with. He was the life of any party and loved basketball. 

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

 

Gold Ribbon Hero: Hailey R.

Meet Hailey, a diffuse intrinsic pontine glioma hero.

When Hailey began experiencing headaches and loss of bodily control, her parents were quick to take notice. Initially, doctors suspected drug involvement but soon discovered she was battling DIPG. Tragically, Hailey succumbed to DIPG shortly thereafter.

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

#childhoodcancer #childhoodcancerawareness   

Gold Ribbon Hero: Maddi

Meet Maddi, an astrocytoma warrior.

For one year, Maddi suffered from chronic headaches that were lessened with allergy medications. Maddi delayed her speech until she was well over two years old. She began complaining of headaches at three years old and at four, when she began Pre-K, her headaches became more frequent and intense. Doctors suspected her headaches were because of poor eyesight so a strong prescription was given to her parents. At five years old, Maddi was in kindergarten and complaining of excruciating headaches. 

The cause of Maddi’s migraines was pilocytic astrocytoma hydrocephalus. She was put on chemotherapy immediately and despite 19 months of treatment, Maddi’s tumors did not respond. She was accepted into a study that would help shrink the tumor by 37%. 

As a side effect of her treatments, Maddi has gained weight at a rapid pace which caused severe obstructive sleep apnea with oxygen needed. When this happened, Maddi received an emergency tonsillectomy and adenoidal surgery to correct the obstructions and now she is oxygen-free. 

As of April 2024, Maddi’s tumor has shrunk and she is enjoying being a kid. She enjoys swimming and making new friends. 

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®