Meet Shir
It all started with a beautiful and active one-year-old baby boy, who suddenly started to have constant diarrhea.
So we spent a lot of time at doctors’ offices, eliminating one possible factor after the other - allergies, parasites, viruses, growing teeth, etc. - and still… we couldn’t identify why Shir is having this constant diarrhea.
It took us 3 months, and five different doctors to get Shir into a simple ultrasound test, revealing a huge tumor in his belly. Cancer. Widespread metastases. Stage 4. High risk. It was the first time we ever heard this frightening word – "Neuroblastoma".
I could see with my own eyes in the ultrasound, that Shir has a very big tumor in his belly. There was no need to explain how wrong this is and shouldn’t be there.
Within a week of these terrible news, Shir had started treatment in our hometown in Israel. After five hard and long months of chemotherapy, immunotherapy, and surgeries in Israel, which did not leave an impression on Shir’s cancer, we left with our entire family and moved to New York, to continue the treatment in a great hospital under a very well-known and experienced doctor.
Even before we started treatments in New York, in the very first scans, we found out that the cancer is out of control and spread significantly in Shir’s lungs. It’s not only spots now, but big masses. And a genuine question mark was raised whether we should go back to Israel even before we started.
Shir For Life
changing the fate of children with Neuroblastoma!
Our mission is to change the fate of children with neuroblastoma cancer, through funding groundbreaking worldwide research, raising awareness and enhancing the practice of neuroblastoma treatment.
Let's give our children a real chance to beat the disease and live a healthy and full life like any child - it's possible!
the facts
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Neuroblastoma is a rare form of childhood cancer that develops in parts of the peripheral nervous system.
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In 90% of the cases, the disease is diagnosed in kids under age 5, more common among boys.
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Most neuroblastomas begin in the abdomen in the adrenal gland, next to the spinal cord, or in the chest.
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Neuroblastoma can spread to the bones, bone marrow, brain, spine, liver, lymph nodes, skin, around the eyes, and in rare cases to the lungs.
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Neuroblastoma represents 8% of all childhood cancer types, and yet responsible for 12% of the death cases caused by cancer in kids.
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50% of kids diagnosed with neuroblastoma have the most aggressive form of this disease, high-risk neuroblastoma.
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~40% of neuroblastoma cases result from the amplification of the MYC-related oncogene MYCN, thus leading to high disease risk and poor prognosis.
Neuroblastoma
Neuroblastoma is a rare form of childhood cancer that develops in parts of the peripheral nervous system.
The disease occurs mainly in infants and children from infancy to the age of five and is considered relatively rare compared to other childhood cancers.
Despite the fact that neuroblastoma is common in ~8% of childhood cancer, it is responsible for ~12% of the causes of death due to cancer in children.
The cause for neuroblastoma or its risk factors are unknown in most cases.
the reality
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Only ~50% of high-risk neuroblastoma patients will be cured, but survivors have life-long co-morbidities such as deafness, endocrinopathies and an up to 20% risk for a treatment-related second malignancy.
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For the 50% of kids with high-risk disease who suffer a relapse, there is no known curative therapy.
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Those diagnosed over the age of 18 months have a less favorable outlook and often fail to respond even to these aggressive combinations of therapy while others frequently relapse, and so alternative treatments are needed.
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Neuroblastoma is a rare form of cancer, and considered an orphan disease which is the “Valley Of Death” for physician scientists, where discoveries are made, tool compounds are developed, but there are no means to get these drugs to kids.
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A large part of the funding for neuroblastoma treatments, and other rare pediatric cancers, are made possible in a private way – private institutions, generous donors, and families of children with neuroblastoma.
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In general, prognosis is poor, neuroblastoma has a long way till breakthrough.
What do we do?
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We find the best and promising RESEARCH in the world, that lack funding, and support them to find the breakthrough and implementation.
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We raise AWARENESS to neuroblastoma within doctors and parents, to support early diagnosis.
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We enhance neuroblastoma practice in Israel through international COLLABORATION .among other methods.
We will find the breakthrough and change the fate of kids with neuroblastoma worldwide!
Since neuroblastoma represents “only” 8% of childhood cancer, it is not a money maker for the drug companies to support.
Sadly, money in the world we live in, is more important than kids’ lives.
So what do we actually do?
Ways to volunteer:
Help us diagnose on time!
As a family of a patient, we would be happy if you could share with us your story about your child’s symptoms till diagnosis. This information will assist with raising awareness to neuroblastoma, and support early diagnosis, which can literally save kids’ lives.
