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Samuel Jeffers Childhood Cancer Foundation

Cooking up a cure for childhood cancer

 

Sam’s Story

Samuel Jeffers was a special little boy. Variously described as a “real charmer”, “Mr. Personality” and “quite a character”, he had a knack for engaging adults and peers alike. He had an adorable smile, an infectious laugh and was wicked smart. He was beloved and adored by everyone who knew him.

 

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Sam loved food and everything about it — eating it, sure, but also cooking it. He was known for his outstanding chili, and he wanted to be a chef when he grew up. And then he died of a brain tumor at the age of 8.

 

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No, this is not a story with a fairytale ending — but we think it’s a story that anyone with children or grandchildren or simply a love of children should hear, because it is not an uncommon story and it can happen to any child — any family — at any moment.
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If there was a terrorist organization that was kidnapping and holding hostage our children at the rate of 45 per day, would we — as a nation — do something about it?

Pediatric Cancer Facts

Every day about 45 children are diagnosed with cancer around the country. Nearly 2000 of them will die each year. Over 150 thousand life-years are lost annually to this disease that knows no geographic boundaries, no socio-economic bias, and no lifestyle discrimination. In fact, the only risk factor for getting cancer as a child is—being a child.

 

The Problem
Lots of money goes into cancer research and support for cancer victims; but only a tiny fraction of that goes towards pediatric cancer. Of the estimated $5.6 billion of funding allocated by the National Cancer Institute in 2009, for example, only $180 million (3.2%) of it went towards pediatric cancer. By 2012, the latest year for which statistics are currently available, $208 million of the $5,249,410,000 NCI budget was allocated to pediatric cancers, or 3.9%.   And there are sources who believe a more accurate estimate of the portion that directly benefits childhood cancer to be only $50 million (less than 1%).
The American Cancer Society, which has done some wonderful things in the national fight against cancer, directed $23,559,000 (2.4%) of their $970 million of annual revenue in 2013 to support research for childhood cancer. This is simply not enough money to fight such a complicated disease that afflicts our children in such a multi-faceted manner.
One of the most pressing problems with childhood cancer is that childhood cancer is not just one disease.  There are many different types and many more subtypes, each one requiring specific and unique research to develop the best method of treatment.
While we have (very thankfully) been successful at treating certain types of pediatric cancer—thanks to increased awareness and a modicum of funding—the success rates for many of the other types of pediatric cancer are not good.  These rarer types of childhood cancer are not so rare when viewed as a whole, as together they account for a good portion of all childhood cancers.  Because so few children are diagnosed with these specific rarer types, little research is done on each one separately.
Further, even for those childhood cancers with relatively high 5-year survival rates, it is estimated that up to 80% of childhood cancer victims will suffer from a serious, or fatal, complication from the treatment they underwent as a child.

 

The Circle
A sort of “vicious circle” therefore exists with respect to most types of pediatric cancer:  They are rare enough that little awareness exists and very little or no research is being done; therefore no new drugs or therapies are developed; therefore children affected by some of these types of cancers are sentenced to almost certain death.  No child should ever have to face that kind of future.  We hope Sam’s Foundation will be able to make a positive impact on some of these rarer types of children’s cancer and also reduce the risks of relapses, secondary cancers and health complications from current treatment plans.

Our organization wants to break the vicious circle and instead start a “virtuous circle”, where awareness leads to funding which leads to research and ultimately cures for our children.

Our Mission

Purpose
To Fund research, clinical trials and other medical and scientific projects targeted at developing cures for pediatric cancer; to assist generally families of children with cancer.

 

Objective
To significantly raise awareness of and funding for pediatric cancer in the belief that Awareness=Funding=Research=Cure

 

Strategy
Building a network of like-minded and well-informed community members whose grass roots efforts will drive additional funding for pediatric cancer; making pediatric cancer a recognized priority for politicians, business and community leaders.

 

Tactics (Day-to-day Activities)
Meeting with leading hospitals, doctors and clinics across the nation (and in some cases overseas) to pinpoint the current needs for pediatric cancer research, clinical trials, additional therapies, medicines, supportive care, etc.; assessing the current status of gaps between available resources and need involving certain less common types of pediatric cancer; establish, organize, promote and run various community fund raising and information events aimed at raising awareness and dollars to find a cure for pediatric cancers; et al.

Contribute To The Foundation

Currently, the Foundation’s top funding priority is the establishment of a Samuel Jeffers Fellowship at Weill-Cornell. Beginning October 20, 2015, in memory of Sam, we have set a funding goal of $75,000 which would be used to fund a full-time, dedicated fellow who would work under the direction of Dr. Mark Souweidane at the Weill-Cornell Medical Center to research thalamic gliomas. Sam had a thalamic glioma and as far as we know no one other than Dr. Souweidane is currently researching this deadly brain tumor.

We hope and believe that Sam’s Foundation, supported by the generosity of our donors and the community, will help build a bridge to tomorrow’s advances and breakthroughs that will give future Sammy’s a chance. Ten years ago, if another family had had an opportunity to do something like this, it is possible that Sam might have lived. Ten years from now, it is our fervent wish that some other child will be able to live if he or she hears those same dreaded words that we did.

#FF0000 Raised $75,000 towards the $75,000 target.



If you would like to donate via traditional mail please send a check payable to the
Samuel Jeffers Foundation
P.O. Box 270
Grover Beach, CA 93483
.
All donations are tax-deductible and you will be sent a receipt if you provide us with your physical or e-mail address.  Because we volunteer our time to the Foundation, 100% of all contributions goes directly to benefit pediatric cancer research or families affected by this horrible disease.  Your contribution will make a difference and is greatly appreciated.
 

 

 

Projects

The Foundation’s primary mission is to fund research, clinical trials and other medical and scientific projects targeted at developing cures for pediatric cancer.

Our Foundation seeks to differentiate itself by helping fund childhood cancer research in areas that are currently dramatically underfunded. Sam died from a particularly rare type of brain tumor (bithalamic glioma), and the medical community was helpless to save him, because there simply have been no clinical trials or meaningful research efforts directed at such rare forms of cancer.

We seek therefore to fund projects that either directly benefit rarer types of childhood cancer or projects that offer exceptionally promising potential to broadly benefit all types of pediatric cancer.

To date, the Samuel Jeffers Childhood Cancer Foundation has made contributions to the following projects below. When we see and help fund projects like these we feel genuine optimism that a cure is truly just a matter of “when” not “if”.

Project Violet

The Fred Hutchinson Cancer Research Center, in conjunction with the University of Washington and Seattle Children’s Hospital, is developing breakthrough treatments with one goal: to create a new class of drugs that effectively cures diseases that are currently considered incurable. From sunflowers to scorpions, the Project Violet team researches natural defenses of plants and animals to develop new anti-cancer compounds called optides that are engineered to attack cancer cells without harming healthy cells around them. These researchers and medical professionals identify and advance therapeutics into clinical trials for children with brain cancer, with increasing focus on types of brain tumors that are uncommon and have the greatest need for translational research.

The Samuel Jeffers Childhood Cancer Foundation is thrilled to support the efforts of Dr. Jim Olson and the whole team at Fred Hutch as they continue to work on their extraordinary breakthrough treatments. To learn more about their incredible efforts click the links to a moving video and some other information below.

http://www.fredhutch.org/en/labs/clinical/projects/project-violet/about-us.html
http://www.fredhutch.org/en/diseases/featured-researchers/olson-jim.html

 

Children’s Brain Tumor Project

Too often, scientific research is competitive instead of being collaborative – individual labs are focused on their own work, trying to make new discoveries on their own. Pediatric brain tumor research is completely different. Small, under-funded labs all across the country have come together to approach this as a collaborative effort. Dr. Souweidane at the Weill-Cornell Children’s Brain Tumor Project, in conjunction with the Memorial Sloan-Kettering Cancer Center works with top pediatric brain tumor experts from coast to coast, all sharing information and discoveries, and all committed to finding answers. That’s one of the reasons why the families of the Children’s Brain Tumor Project – families who have banded together to support the research – come from all across the United States. All are pulling together on this, because we know that every success leads to the next one, and eventually they will merge into the one we all want: a cure.

Dr. Souweidane’s convection-enhanced delivery (CED) trial is one example of the amazing work being done at the Brain Tumor Project. Dr. Souweidane’s project was more than a dozen years in the making, with virtually no support. Over the past two to three years, however, more and more families and Foundations such as Sam’s have stood up and said that is simply not acceptable. Since Dr. Souweidane received FDA approval for the CED trial in December 2011, he has treated 21 patients, at 6 dosage levels, with no adverse effects of the procedure. Since this Phase I trial is only to test the safety of the procedure, proving it to be safe is the first big step. Dr. Souweidane will treat a few more children this year, at a 7th dosage level, to complete the trial, then will expand it to many more institutions around the country, and treat many more children with many different drugs that have potential against brain tumors.

Thanks to family and foundation donations, the Brain Tumor Research Project now has several fellows and medical students working in the lab doing the groundwork for an upcoming expansion of the clinical trial. That means a shorter path to approval—instead of Dr. Souweidane spending another decade on his own doing the pre-clinical work needed to apply for FDA approval, that work is already underway so they can move quickly to the next phase. The Project has also been able to launch a second clinical trial—testing intra-arterial chemotherapy in patients under 19—that is helping advance the science at a rapid pace.

We believe we are nearing the “tipping point” for pediatric brain tumors. Families and smaller foundations are providing the support and momentum that researches can’t get from major funding organizations, and that is making all the difference. The Samuel Jeffers Childhood Cancer Foundation is proud to support the efforts of the Brain Tumor Research Project. Please click the links below for more information about this exciting project.

http://weillcornellbrainandspine.org/in-the-news/milestone-clinical-trial-dipg-approved

http://weillcornellbrainandspine.org/clinical-trial/convection-enhanced-delivery-124i-8h9-patients-non-progressive-diffuse-pontine

 

Currently, the Samuel Jeffers Childhood Cancer Foundation’s top funding priority is the establishment of a Samuel Jeffers Fellowship at Weill-Cornell. We have set an annual funding goal of $75,000 which would be used to fund a full-time, dedicated fellow who would work under the direction of Dr. Mark Souweidane at the Weill-Cornell Medical Center to research thalamic gliomas. Sam had a thalamic glioma and as far as we know no one other than Dr. Souweidane is currently researching this deadly brain tumor. Dr. Souweidane is the head pediatric neurosurgeon at Memorial Sloan-Kettering in NYC, and he is one of two doctors who runs the Children’s Brain Tumor Project. Dr. S would like to eradicate all types of brain tumors in children, but targeted research is critical, because even those brain tumors situated in the same anatomical region have distinct molecular and genomic features that might influence treatment plans. Even though tumors such as thalamic gliomas are rare and require concentrated research efforts, there is every reason to believe that this targeted research will pay enormous dividends across the spectrum of children’s tumors. Every step forward we take in this area has a cumulative effect and builds upon itself, leading to further medical advances.

For John & Sabrina—Sam’s parent’s—and the Foundation, this is huge. It is an opportunity to both fund a project that is near and dear to our hearts and at the same time holds a tremendous amount of potential for broader advances in children’s cancer research.

We hope and believe that Sam’s Foundation, supported by the generosity of our donors and the community, will help build a bridge to tomorrow’s advances and breakthroughs that will give future Sammy’s a chance. Ten years ago, if another family had had an opportunity to do something like this, it is possible that Sam might have lived. Ten years from now, it is our fervent wish that some other child will be able to live if he or she hears those same dreaded words that we did.

 

Tomorrow’s Possibilities

As examples of potentially promising projects currently “outside” the world of pediatric cancer that nevertheless hold promise for their potential applicability to children’s cancer, here are a few other research efforts that the Samuel Jeffers Childhood Cancer Foundation is assessing for possible Funding consideration.

http://www.ksat.com/news/brain-tumors-stopped-with-new-ctrc-radiation-process

http://www.sciencedaily.com/releases/2015/09/150915104953.htm

https://www.dtmi.duke.edu/news/can-lung-cancer-drug-fight-brain-tumors

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