Call: 352-538-2155        Email: kathy@joeywings.org

 

MISSION

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

In the summer of 2017, Joey's Wings Foundation donated $100,000 to the UT Southwestern Medical Center Kidney Cancer Program to establish the translocation kidney cancer research fund studying Joey's cancer. UTSW kidney cancer program, led by the excellent team of Dr. Jim Brugarolas, is awarded by the National Cancer Institute as the specialized program of research excellence, which discovered several new types of adult and childhood kidney cancer. They are one of the leading institutions in immunotherapy and radiation therapy for kidney cancer. The funding from Joey’s Wings has led to the development and characterization of the first mouse model of translocation renal cell carcinoma. These mice develop aggressive tumors that look like the human tumors, and are a powerful tool for studying how these tumors develop, as well as for testing novel therapies.

 

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 no 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.

 

More info here.

Massage therapy program at the Shands Children’s Hospital

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.

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

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.

Joey's Wings Foundation is a non-profit 501(c)3 organization, EIN 47-4827646. Donations made are tax-deductible in the United States.

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