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Joey would have been 20 in March. But he is forever 10. 

   Joey was a very energetic 5th grader. He was a math whiz, enjoyed soccer, and played the violin in the county youth orchestra. He also was an artist and origamist. 

   On March 20, 2013, Joey was diagnosed with a stage 4 translocation renal cell carcinoma (tRCC). We were told there was no standard treatment for this cancer. Joey underwent two major surgeries, four different oral chemotherapies and one round of radiation. His tumors grew more and spread.

   In April 2014, we started a petition of compassionate use of a new immunotherapy drug called Opdivo (nivolumab) that targets the type of tumors that Joey had. It was already in trials and saving the lives of adult cancer patients, but there were no trials available for children. The petition was not granted. 

   On September 4th, another immunotherapy drug Keytruda (pembrolizumab) was approved by the FDA with adult melanoma patients.  Joey started the off-label use of Keytruda. He showed no major side effects from this drug and his tumors in his neck shrank significantly and all other tumors were stable.

We had so much hope. However, his tiny body was too exhausted to fight so much disease. On November 24, 2014, Joey slipped into a coma.

Joey passed away two days later.

   Joey’s journey led to the founding of a 100% volunteer-led pediatric cancer research charity, Joey’s Wings Foundation [see below for link]. Joey’s Wings has worked with the nation’s top researchers in renal cell carcinoma to discover a cure for kidney cancer and develop transforming patient care.

Joey’s Wings provides:

~free tutoring services for children battling cancer,

~offers a patient registry and tissue bank for families to connect,

~lobbies for legislation to improve treatment options, and

~provides financial assistance for pediatric kidney cancer patients.

   Joey’s love of origami inspired us to establish the Cranes for a Cure campaign, one of the foundation’s many fundraisers for pediatric cancer research and awareness. We sell colorful origami strings and mobiles consisting of paper cranes, provide them to cancer patients, and create large public art installations using the folded cranes.  By making large string mobiles, each with 2,000 cranes, these art installations would create an impactful vision and raise awareness that 2,000 children die each year from cancer.

   Joey’s Wings is incredibly grateful for all the support from the community which makes it possible for our researchers to develop less toxic therapies to treat kidney cancer among children and young adults.

   Joey’s experience is why Elevate is reimagining treatments for childhood cancer. Our children need us all. His experience is not isolated, but bears a painful example that so many families have now experienced.

“In 2014…another immunotherapy drug Keytruda (pembrolizumab) was approved by the FDA with adult melanoma patients.  Joey started the off-label use of Keytruda. He showed no major side effects from this drug and his tumors in his neck shrank significantly and all other tumors were stable.”

It would be 2020 before Keytruda was approved by the FDA in cases of solid tumors in children with high mutational burden. [LINK Here] This is unacceptable. We must do better.

   As an organization Elevate seek’s to dramatically improve the lives of those diagnosed with childhood cancer. When you choose to collaborate alongside us you provide the opportunity to ‘let kids be kids‘ and change lives.