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 |  1150 FULLER RD Sn Luis Obisp CA 93401-7643

End Kids Cancer is headquartered in Sn Luis Obisp, CA, has an EIN of 90-0648733, and is a 501(c)(3) organization. Donations are tax-deductible.  It is classified by the IRS as a Charitable Organization, with a ruling year of 2011.

(Source: IRS Business Master File and Form 990)


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Encompass Rating System by Charity Navigator


Charity Navigator’s Encompass Rating System evolves on a quarterly basis as we add new measures and indicators, which we call Beacons. Check back often to see how this organization’s score changes.

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Charity Navigator provides 501(c)(3) nonprofits with an Encompass Rating when we have available data. Please see the sections below for more information on why this organization is not currently rated.

This organization cannot be evaluated by our Encompass Rating methodology because it files Form 990-EZ, as allowed by the IRS for charities with less than $200,000 annual revenue.

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...   Finance & Accountability


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Impact & Results Score (BETA)

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Impact & Results Report

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Overview

Overview


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Impact & Results scores are not available in Encompass Rating System Beta V1.

GuideStar Gold Seal of Transparency

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Note: Encompass Rating Beta V1 does not incorporate impact data into a charity's rating.


What is your organization aiming to accomplish?

Our short term goal is to significantly reduce relapse rates for children suffering from neuroblastoma. Ultimately and in the long run, our goal is to support research that would lead to a cure for this disease. IN THE MEANTIME we have the ability to save lives today through EDUCATION Children are dying needlessly who could be saved with current treatments because their parents and attending physicians aren't aware of them. In addition, when frontline treatments fail there are only a handful of centers that have the know how to deal with relapse. We have produced a free guide booklet, Steps to Hope that teaches parents and caregivers how to find the these leading centers focused on their child's cancer, to confirm their child's diagnosis, and to get treatment recommendations. (it is available under the resource tab above), The book shows also how to overcome the financial and emotional roadblocks that prevent many families from getting the life-saving treatments they need. The book is designed to benefit adults fighting cancer as well. Steps to Hope has been well-received among former cancer patients and highly respected cancer professionals. Most notably, Dr. Siddhartha Mukherjee, Pulitzer Prize winning author of The Emperor of All Maladies, endorsed Steps to Hope and recommended it to Reader's Digest where it was highlighted in the March 2014 issue. The former President of the American Academy of Pediatrics, Dr. Fernando Stein, has endorsed it. We sent a copy of Steps to Hope to then Vice President Joe Biden. In response we were invited to represent pediatric cancer research at the Cancer Moonshot Summit in Washington D.C.


What are your strategies for making this happen?

Our strategy is to support the doctors who are producing the most promising research focused on finding a cure for neuroblastoma (NB). Many of them are advising our foundation. We know who the most capable individuals are in the field of neuroblastoma research and are innovating the most promising treatments because 18 years ago, when my wife and I were told our daughter had no chance of survival because she had relapsed with neuroblastoma, we made a pact that there would be no limit to where we would go and what we would do in order to save her life. We were convinced that somewhere out there was a doctor who could save her. We found him, and we found others like him. In that all-out effort we discovered who was writing the most literature about NB and which doctors at which centers were conducting the most research with the most success, and we have followed them ever since. These are the same doctor is keeping kids alive with unconventional means years before clinical trials are opened. In addition, when a child anywhere in the country is diagnosed with neuroblastoma, that child will, in all likelihood, be treated with protocols developed by doctors on EKC's Medical Advisory Board. As for our secondary function, our goal is to disseminate to the parents the information we learn while supporting these investigators


What are your organization's capabilities for doing this?

We have 18 years of experience fighting pediatric cancer. We are constantly attending cancer conferences throughout United States and reading the latest cancer literature. We also rely heavily on our Medical Advisory Board for the purpose of identifying the most promising research to support.


How will your organization know if you are making progress?

Our goal is to significantly reduce relapse rates for children diagnosed with neuroblastoma. Our ultimate goal is to support research that will lead to a cure for neuroblastoma. Quantifying these numbers is relatively easy because at the end of each clinical trial the doctors will determine if the trial has significantly improved survival rates. Want to find the effectiveness of disseminating our information through press releases and our cancer guidebook Steps to Hope is more difficult. At this point we can only rely on antidotal comments from parents and other readers of our cancer guide. We are constantly getting very positive comments concerning the helpfulness of our cancer guide. However, we do not know if this is representative of all the books we have disseminated.


What have and haven't you accomplished so far?

Our placement of funds has already shown to be effective. FDA and NCI funding has followed our support of early phases cancer research of some of the most promising non-toxic treatments using immunotherapy. Our first grant went to Drs. Malcolm Brenner and Chrystal Louis at the Center for Cell and Gene Therapy, Baylor College of Medicine, Texas Children's Hospital. They are working on using T-Cells and mouse antibodies to kill cancer cells. This trial failed to produce positive results. However, much was gained which is leading to a modified new trial. Dr. Dean Lee of M.D. Anderson and Dr. Robert Seeger of Children's Hospital Los Angeles are using autologous NK cells + lenalidomide + ch14.18. This trial is not yet open. Dr. Shakeel Modak of Memorial Sloan-Kettering Cancer Center for his project, Combination of Cell-Mediated and Antibody-Mediated Immunotherapy for High-Risk Neuroblastoma: Phase I Study of Haploidentical Natural Killer Cells plus Humanized 3F8. Results are not in yet. Dr. Jason Shohet at Texas Children's Hospital/Baylor, who has identified the neuroblastoma stem cells and we are optimistic he has developed a way to deliver it a fatal blow. Results of his work are not in yet. Bivalent vaccine was presented at this conference by the Memorial Sloan-Kettering Team. So far the results are outstanding. Because of this the trial is advancing into a phase III trial. Liquid Biopsy. The early phase of this project has produce positive results and is now moving into the second phase. Education The impact of our free cancer guide, Steps to Hope, is impossible to determine. We do know that we are constantly getting positive comments from parents that have children with cancer, adult patients and medical professionals. Some of the more noteworthy endorsements are: Dr. Siddhartha Mukherjee, Pulitzer Prize winner for his book The Emperor of All Maladies Dr. Fernando Stein, former president of the American Academy of Pediatrics Vice President Joe Biden Reader's Digest Magazine



ImpactMatters Data


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GlobalGiving


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Classy


Classy created the Annual Classy Awards to recognize the innovative work of nonprofits around the world. Since 2009, thousands of organizations have been recognized through the Classy Awards. Nominees complete a data-driven framework that helps them to understand and articulate the impact of their programs.


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