The Kortney Rose Foundation, Inc.
Programs and results
What we aim to solve
In 2005 when 9 year old Kortney Rose Gillette was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG), a tumor in the brain stem, there was no treatment or hope for a cure. Her parents were told that all that could be done was try to use radiation to shrink her tumor and give her a little bit more time, but basically it was about giving her the best quality of life for the time she had left. Over 50 years ago when a child was diagnosed with this tumor, the response was the the same. We've put people on the moon, but we haven't been able to find any effective treatments for this tumor and many other types of brain tumors. The Kortney Rose Foundation has supported research since 2007, but in 2011 became a founding research partner in the Children's Brain Tumor Tissue Consortium (CBTTC), which now has 16 collaborating institutions working together sharing data and specimens to find answers faster.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Kortney's Challenge 2 Mile FUN Run/Walk
Annually at Monmouth Park in Oceanport, NJ, we hold Kortney's Challenge 2 Mile Fun Run/Walk. It is an event that gets the community involved and active for a great cause. We keep the event at 2 miles so all levels may participate. We typically have 500 participants.
Great Food for a Great Cause Fundraiser
Joining forces with the Turning Point Restaurants we hold a weekend long fundraiser at all of their locations.
Kortney's Coins for the Cure Fundraiser
This a fundraiser used in schools and in retail outlets. In schools each child receives a custom Kortney Rose bank to collect money in and in retail stores we provide Lucite boxes to collect donations in.
Where we work
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Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
To find less toxic and more effective treatments for brain/central nervous system (CNS) tumors which are the number one cause of death by disease in children. There have been no major advances in the treatment and care of these patients in the past thirty years and many of the chemotherapies used on the children are adult chemotherapies that are decades old, because there are no other options. Radiation, chemotherapy and surgery are the way brain tumors are treated and leave children with major long term deficits and often manifest in secondary cancers that shorten the child's life, even if they didn't die from the primary brain tumor diagnosis. We need better, less toxic and effective treatments. Only 4% of the National Institute of Cancer's annual budget is given to all forms of pediatric cancer research. That means 96% goes to adults, even though it has been proven that childhood cancers account for more life years lost than adult cancers.
What are the organization's key strategies for making this happen?
Through our signature events we raise both awareness and research funding for our mission. We have a 2 Mile Fun Run/Walk called Kortney's Challenge annually as well as a very successful restaurant fundraiser. We do many other smaller fundraisers and many people do their own fundraisers to support our efforts.
Kristen Gillette, Founder and President, often speaks at schools and other venues to raise awareness to brain tumors and the facts outlined above and the need for more research funding.
What are the organization's capabilities for doing this?
We believe that collaboration is they key to finding research discoveries quicker. Researchers and institutions who are working in silos and only interested in advancing their status by claiming credit for findings aren't helping out kids. It's about Cures Not Credit. In 2011 discussions with the head of Neuro-Oncology at The Children's Hospital of Philadelphia (CHOP) led our foundation to be one of the original funding partners of the Children's Brain Tumor Tissue Consortium (CBTTC), which has expanded from four U.S. based institutions collaborating, to 16 worldwide. The specimens collected have led to the Pediatric Brain Tumor Atlas which is the largest and most clinically annotated collection of pediatric brain tumors in existence. Thanks to the development and use of big data, the information is available immediately out of Cavatica, the first pediatric cancer cloud. The CBTTC was funded by philanthropy with no government support. Our foundation is a driving force in this.
What have they accomplished so far and what's next?
The Kortney Rose Foundation (KRF) has done much to raise awareness about the prevalence of pediatric brain tumors and the lack of federal funding to childhood cancer. In 2009 our foundation worked with local NJ legislators to craft and pass a resolution that annually calls upon the sitting Governor of NJ to declare by proclamation that May is Brain Tumor Awareness Month. In 2014 Kristen Gillette, Executive Director, received a "Seeds of Hope Award" by New Jersey Monthly Magazine. In 2015 the foundation was inducted into the Children's Hospital of Philadelphia's (CHOP) Chairman's Circle for donors who have donated one million dollars or more to the hospital. KRF has been a significant supporter of the Neuro-Oncology program at CHOP, was a founding funder of the CBTTC in 2011 and continues to be a significant supporter of the CBTTC, has funded research at Lucille Packard's Children's Hospital-Stanford, and Joseph M. Sanzari Children's Hospital at Hackensack University Medical Center.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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The Kortney Rose Foundation, Inc.
Board of directorsas of 06/27/2019
Mrs. Kristen Gillette
No Affiliation
Term: 2006 -
Kristen Ann Gillette
Monmouth University