Mission

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Joey’s Wings Foundation, a 501c3 non-profit charity, was established in 2014 in the memory of Joey Xu, who was taken from us by childhood cancer on Nov. 26, 2014. Joey was diagnosed with xp11.2 translocation renal cell carcinoma, a rare but aggressive cancer, which has no standard treatment protocol. Our mission is to fund research that focuses on kidney cancers affecting children and young adults, raise awareness and provide support to families affected by childhood cancer. Our foundation is supported by an active Board of Directors operating solely on a volunteer basis. 100% of all donations made is used towards research and treatment options, patients care and advocacy for developing less toxic therapies to treat kidney cancer among children and young adults.

 What we do

Translocation renal cell carcinoma patient registry and tissue bank

Translocation renal cell carcinoma is a subtype of renal cell carcinoma. It is also described as TFE3 rearranged renal cell carcinoma, Xp11 translocation PEComa, melanotic Xp11 translocation cancer, t(6;11) translocation renal cell carcinoma, and TFEB rearranged renal cell carcinoma, and MiT family translocation carcinoma. There is so standard treatment protocol for patients with MiT family translocation RCC. Ongoing studies will work to identify prognostic factors and therapeutic targets. There are around 10-25 children and 500 adults diagnosed with translocation RCC each year in the US. Because of lack of tissue, it’s hard for the researchers to do the further studies of this less common cancer. Joey’s Wings starts an international patient registry and tissue bank with the Johns Hopkins Medicine.

Fund whole genome sequencing of tRCC tumors

We are funding the whole genome sequencing of 23 translocation tumors in MD Anderson Cancer Center. It is the first large scale whole genome sequencing of this cancer in the world.

Financial assistance for pediatric kidney cancer patients

We are looking for families who has a child diagnosed with pediatric renal cell carcinoma. One of our mission is to provide financial assistance with medical bills, travel expenses, toys, and other items that your family might need during this difficult time. If you would like to be considered for assistance with your families fight against pediatric renal cancer, please apply for financial assistance. We will give out $1,000 to one family each quarter of the year.

Massage therapy program at the Shands Children’s Hospital

Joey’s Wings donates $7,500 to the UF Health Integrative Medicine Program. We pledge a three-year massage therapy program for the parents at the infusion room on the oncology floor while their children are getting chemotherapy. This fund will provide 600 parents and families with 15-minute chair massage over the course of the years. We hope the massage can help relieve some of the burden and anxiety for parents and families.

Cranes for a cure

Cranes for Cure is inspired by Joey’s love of origami. Cranes for Cure’s mission is to fund pediatric cancer research by selling origami crane strings and mobiles, and to provide origami cranes to pediatric cancer patients.

Advocacy in Childhood Cancer & lobbying efforts

Being a strong advocacy and policy voice for children with cancer. Join Kids V Cancer’s efforts to successfully advocate for passage of the Creating Hope Act, which creates priority review vouchers as incentives for drug development for seriously ill kids. Under the Act, sponsors who receive FDA approval for new drugs for seriously ill children, including children with cancer, receive a fully tradable voucher. The voucher provides the holder the rights to faster FDA review on any other drug.

 Autopsy tissue donation program

We start the autopsy tissue donation program for pediatric renal cancers, which has already led to new basic research and scientific discoveries.

Where your money goes

Joey’s Wings Foundation operates out of home-based office. All of our fundraising events are planned and executed by volunteers who are passionate to help children fight cancer. Our minimal administrative costs are covered by a portion of the proceeds from merchandise sales (greeting cards, calendars of children’s art, tshirts and thirty-one gifts, etc.) that makes it possible for 100% of every dollar raised in support of the Joey’s Wings Foundation to go directly to research, treatment options, parents support and advocacy for developing less toxic therapies to treat kidney cancer among children and young adults.

During Joey’s cancer treatment, we traveled all over the country and met a dedicated group of researchers, pediatric oncologists, and immunotherapy specialists. From this group, we selected a team that serves as the medical advisors of the Joey’s Wings Foundation. They advise us on how your money should be spent. We also partner with institutions who are making tremendous strides toward developing personalized treatment regimens for the cure of metastatic kidney cancer patients.

 

 

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