Blog Archives

Will Trump Sign the Childhood Cancer STAR ACT?


staract1-300x122In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) introduced the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act.  This bipartisan legislation will advance paediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing resources for survivors and those impacted by childhood cancer.

Too many young people’s lives have been cut short by cancer.  These kids and their families who’ve battled this disease inspire us to take action.  The Childhood Cancer STAR Act will help young cancer patients and their families get access to potentially life-saving treatments, support survivors, and move us another step closer toward our goal of ending pediatric cancer,” said Senator Reed.

This bipartisan legislation will continue the advances in research, prevention and care for our loved ones and families impacted by childhood cancer,” said Senator Capito. “The Childhood Cancer STAR Act gives parents and patients access to the information they need to make vital decisions about treatment and care post-treatment. This legislation will also give those who understand the unique needs of childhood cancer patients a seat at the table when decisions about cancer care are taking place.”

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Direct-To-Brain Chemo Better Than Systemic Drugs When Immunotherapy Is To Follow


glioblastomaIn a recent study, Anti-PD-1 antitumor immunity is enhanced by local and abrogated by systemic chemotherapy in GBM, researchers at Johns Hopkins have found in experiments on mice with a form of aggressive brain cancer, that localised chemotherapy delivered directly to the brain rather than given systemically may be the best way to keep the immune system intact and strong when immunotherapy is also part of the treatment.

The researchers say their study results, reported in Science Translational Medicine, could directly affect the design of immunotherapy clinical trials and treatment strategies for people with a deadly form of brain cancer called glioblastoma.

We understand that our research was done in a mouse model and not in humans, but our evidence is strong that systemic chemotherapy alters the immune system in a way that it never fully recovers,” says Michael Lim, M.D., associate professor of neurosurgery and director of brain tumor immunotherapy at the Johns Hopkins University School of Medicine, and member of the Johns Hopkins Kimmel Cancer Center.

With aggressive cancers like glioblastoma, it is important that we don’t handicap the defenses we may need to add alternative treatments, such as immunotherapy, to chemotherapy,” he adds.

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Brain Tumour Foundation Working to Cure Paediatric Brain Cancer


ribbon_gray_brain_cancer03The death of a child is an event no parent can ever truly move beyond. Though grief is a lifelong process, for some a personal tragedy such as this can be a springboard to launch an organisation focused on bringing attention to an important cause.

That was the case for Jill and Mazen Kamen, who officially launched the Kamen Brain Tumor Foundation after losing their 19-year-old son in April to brain cancer.

In 2009 he had been diagnosed with a type of rapidly growing brain tumour called a high-grade astrocytoma that, despite aggressive treatment, eventually evolved into a glioblastoma — the highly malignant brain tumor that also took the lives of Vice President Joe Biden’s son, Beau, in 2015 and former Sen. Ted Kennedy in 2009.

The first phase is shock when your child is diagnosed,” said Mazen. “You can’t believe it. You start questioning the why, the where. It’s like someone has hit you with a Mack truck. You have to go through that. But you also have to regroup yourself very quickly, because now you have a long, tedious road ahead. And you really have to do your homework very quickly and efficiently, if you can, to face this.”

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Are Better Targeted Treatments Possible in Children’s Brain Cancer?


zebrafish-model-cancer-researchAccording to a recent article, MEK Inhibitors Reverse Growth of Embryonal Brain Tumors Derived from Oligoneural Precursor Cells, in the journal Cell Reports, researchers at Huntsman Cancer Institute (HCI) at the University of Utah have identified an existing group of drugs that appear to reduce or eliminate a particular subgroup of childhood brain cancers while sparing normal brain tissue.

Childhood Brain Cancer affects thousands of children globally every year, and it kills more children than any other cancer. Malignant brain tumours grow rapidly and are likely to spread into other areas of the brain very quickly. Although brain tumours in children are the second most common form of childhood cancer, it is still unknown what the cause of most childhood brain cancers is.

The research was conducted using a new zebrafish animal model system developed by the researchers, which closely resembles an aggressive subtype of paediatric brain tumours.

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Scientists Tackle Lethal Childhood Brain Cancer


dipgIn precision medicine era legacy gifts of patient brain tissue reveal disease mechanisms and new therapeutic approaches.

Sandra Smith, a pastor’s wife and mother of three in DeWitt, Mich. and her son were both diagnosed with cancer during the same week. She with an aggressive form of breast cancer and her son, six-year-old Andrew, with Diffuse Intrinsic Pontine Glioma (DIPG), a fatal childhood brain cancer that typically strikes between the ages of 4-10 and kills most within a year of diagnosis.

In DIPG, the malignant cells entwine with normal brain tissue in a region that controls critical functions such as breathing and heart rate, making it impossible for a surgeon to remove the tumour. Radiation therapy has been proven to be the only treatment that helps, and then only to extend life by a few short months. Andrew outlived the “typical” DIPG patient by surviving just over two years after his diagnosis, passing away at the end of 2009.

DIPG accounts for about 10% of childhood brain and spinal cord tumours. It is the second-most common paediatric brain tumour and the leading cause of cancer death in children. Treatment options and survival rate for DIPG have not changed in 40 years.

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Living With Retinoblastoma ~ Part I


posters-sign-to-look-english-2Retinoblastoma is a fast growing eye-cancer which affects babies and young children. Tumours may form in one eye (unilateral) or both eyes (bilateral), and can spread outside the eye (extraocular retinoblastoma). Rarely, a separate tumour develops in the brain (trilateral retinoblastoma). This cancer typically develops before 3 years of age, and some children are born with tumours.

Retinoblastoma affects about 1 in 15, 000 live births, and an estimated 9,000 children develop the cancer globally each year.  Due to global population distribution, 90% of children with retinoblastoma live in economically developing countries.

The most common early sign of retinoblastoma is leukocoria, a white glow in the pupil (black circle) of the affected eye, seen in flash photographs. This reflection may be visible to the naked eye in dim light when cancer fills the eye, or in very young babies. Other signs include a squint (misaligned eyes), red, painful or swollen eye. Trilateral retinoblastoma causes a range of symptoms, depending on its location in the brain.

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Childhood Brain Cancer & Battle Scars


Brain Cancer WarriorA Hutchinson boy who’s fighting cancer says his dad is his hero. The feeling’s mutual, and both have matching “battle wounds” to prove it.

Gabriel Marshall, 8, is like any other kid. He loves to laugh, play outside, and sometimes pick on his younger sister. It’s times like those Gabriel cherishes.

I feel like a free kid. I feel like a normal person,” said Gabriel Marshall.

The soon-to-be third grader has been battling brain cancer since March of 2015.

I couldn’t believe it. I was shocked.. you know how could this happen?” asks Gabriel’s mom, Bethany Schultz. “He has always been so healthy, so active and then they turn around and rip my heart out.

At the moment when we found out about it, it felt like somebody had ripped my stomach out of my body,” said Gabriel’s dad Josh Marshall.

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Artificial Intelligence Reveals Mechanism behind Brain Tumour


brain-cancerResearchers at Uppsala University have used computer modelling to study how brain tumours arise.

The study, which was published recently in the journal EBioMedicine, illustrated how researchers in the future will be able to use large-scale data to find new disease mechanisms and identify new treatment targets.

The last ten years’ progress in molecular biology has drastically changed how cancer researchers work. Instead of almost exclusively using different biological models, like cells, today large-scale statistical analyses are increasingly used to understand tumour diseases and find new therapies.

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Celebrating Heini – Brain Cancer


heini-sept-16-1September is International Childhood Cancer Awareness Month and once again the Little Fighters Cancer Trust is hard at work sharing everything we can regarding Childhood Cancer and trying to raise Childhood Cancer Awareness by sharing information and Personal Stories with you.

Today we are once again sharing the story of Little Heinrich van Straaten (Heini). We have shared his story before, but we feel that we need to share it again as this Little Fighter is still fighting every day of his life as a result of brain cancer.

The Little Fighters Cancer Trust would like to sincerely thank all our Onco Parents that have shared with us in the hope that their stories can help other parents who have children that are ill but are not sure what the problem is, and to raise Childhood Cancer Awareness so that earlier diagnosis can be done.

We will continue to publish more poems and stories by Onco Parents throughout this month as we work hard to bring Childhood Cancer to the fore and spread Childhood Cancer Awareness – all in the effort to inform and educate other parents to the ravages of Childhood Cancer and to remind everyone that

The Best Defence against Childhood Cancer is Awareness and Early Diagnosis

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Brain Cancer Overtakes Leukemia as Top Cause of Cancer Deaths in Children


brain cancer awareness typographyLeukaemia is no longer the No. 1 cause of cancer deaths in children – brain cancer has taken its place, according to a new report.

Paediatric cancer death rates have been dropping overall since the mid-1970s, according to a report released Sept. 16th from the National Center for Health Statistics. The report details changes in cancer death rates among children and teens ages 1 to 19, from 1999 to 2014.

Lead author Sally Curtin, demographer and statistician at the NCHS, which is part of the Centers for Disease Control and Prevention (CDC), said:

The shift from leukemia to brain cancer as the leading site of cancer death is a noteworthy development in the history of childhood cancer as it was always leukemia until quite recently,”

There were still 1,785 cancer deaths in children and adolescents in 2014, according to Curtin, and Brain cancer and leukaemia accounted for more than 50% of those.

In 1999, 6/20 cancer deaths among children were due to leukaemia, and about 5/20 were due to brain cancer, according to the numbers in the report. By 2014, those numbers had reversed.

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September is Childhood Cancer Awareness Month


go gold - awarenessSeptember is Childhood Cancer Awareness Month, a time to honour and remember children and families affected by this devastating disease,and help rally support to give Children with Cancer better outcomes by supporting Childhood Cancer Awareness.

Each September, we make an extra special effort to raise awareness of childhood cancer, the impact that a diagnosis can have and how the Little Fighters Cancer Trust’s essential work helps young cancer patients and their families.

Families, Caregivers, Charities, Non-Profit Organisations and Research groups across the globe observe September as Childhood Cancer Awareness Month.

During the Month of September

  • 25,000 families around the world will get the terrible news that their child or teen has cancer.
  • 6, 667 families will experience the loss of a child.

More children are being diagnosed with cancer today than ever before, and unfortunately in Africa, and in South Africa, many of them die because they are either diagnosed too late or because the families do not have the financial wherewithal to pay for the very expensive cancer treatments and all the other costs that go with a cancer diagnosis.

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Early Trial Finds Ingenious Brain Tumour Therapy Safe and Effective


Brain Anatomy of the Child: Lateral ViewA new gene therapy treatment for high-grade gliomas — the most aggressive brain tumours — has been found to be safe and to improve patient survival.

The Phase I dose-escalation trial was conducted at Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and multiple other sites and published in the journal, Science Translational Medicine.

Overall, 29% of our patients were still alive after two years,” said Noriyuki Kasahara, M.D., Ph.D., a gene therapy expert at Sylvester and professor of cell biology and pathology at the Miller School of Medicine, who originated the therapy in his lab. “If you take the higher dose cohorts, the number rises to 40%. Almost half of our patients are living more than two years with a disease that normally causes people to die after around seven months.

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