Shir for Life - changing the fate of children with Neuroblastoma!
Neuroblastoma, being a rare disease, is considered an “Orphan Disease” - while scientists make new discoveries and develop new solutions, they cannot raise the funds needed to produce medicine for children with this disease. Professionally, this is known as the “Valley of Death”.
It seems inconceivable but true - children’s lives don’t matter as much as money does. Therefore, critical funding for groundbreaking research is lacking.
The reality is that there is not enough awareness of Neuroblastoma, and not enough funding resources. But we cannot let this fault continue to take the lives of children with the disease.
Not one more child should die. No parent or sibling should experience such loss.
We want to solve this problem for good and give a real chance for children to beat this disease.
Our goal is to change the fate of children with neuroblastoma cancer by several means:
Fund impactful research worldwide - identify the best and promising studies, lacking funding and support them to reach significant breakthroughs
Raise awareness among parents and doctors to allow earlier detection which can make the difference and improve the prognosis (worldwide).
Improving neuroblastoma practices in Israel through international collaborations, among other methods
We will help find a much-needed breakthrough and help to change the fate of children with neuroblastoma worldwide!
Neuroblastoma is a rare form of childhood cancer that develops in parts of the peripheral nervous system
While it consists of only 8% of childhood cancer types, and yet responsible for 12% of the death cases caused by cancer in kids
In ~90% of the cases, neuroblastoma is diagnosed in children below the age of 5 and is more common with boys.
~50% of kids diagnosed with neuroblastoma have the most aggressive form of this disease, high-risk neuroblastoma
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
For the 50% of kids with high-risk disease who suffer a relapse, there is no known curative therapy
Neuroblastoma claims the lives of infants and toddlers whose just started their lives.
We are determined to do anything to allow these children a fair chance of beating this disease and living a healthy and full life like any other child - We can make it happen!
A few facts about neuroblastoma:
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.