Philadelphia, PA (May 17, 2019) – Alex’s Lemonade Stand Foundation (ALSF) has partnered with Storm The Heavens Fund to support research in Diffuse Intrinsic Pontine Gliomas (DIPG). ALSF and Storm The Heavens Fund share a vision of funding childhood cancer research to ultimately find cures for all children with cancer.

Storm The Heavens Fund was formed after Philomena “Bean” Stendardo passed away from DIPG in 2017 at eight years old, just 10 short months after she was diagnosed. DIPG is a diagnosis that comes with a median survival of just 9 months – it took away Philomena’s ability to walk, talk, smile and eventually, breathe, while her mind stayed completely intact. This highly aggressive and difficult-to- treat brain tumor is found at the base of the brain and is uniformly fatal - with a less than 1% survival rate. Storm the Heavens Fund’s mission is to advocate for children diagnosed with DIPG by funding desperately-needed research and spreading awareness.

“There is no cause greater than the fight for our children’s right to grow up to be adults. We must do better.” said Mina Carroll, Philomena’s mom and Co-Founder of Storm The Heavens Fund.

Storm the Heavens will help fund an Innovation Grant for Dr. Sriram Venneti of University of Michigan. The goal of Dr. Venneti’s study is to understand how DIPG tumor cells are addicted to glutamine and how DIPG tumor cells use glutamine to drive tumor growth. Once this is understood, the goal is to use that knowledge to break glutamine addiction and kill DIPG cells thus laying the groundwork for developing more effective treatments for these lethal brain tumors.

For more information about Alex’s Lemonade Stand Foundation’s charity partnerships, visit AlexsLemonade.org/grants/charity-partners.

 

Background

DIPG is a disease which strikes at the heart of childhood (usually between the ages of 5-9) and affects the pons portion of the brainstem, eventually rendering nervous system function such as chewing, swallowing, walking, talking and breathing impossible. It is one of the most resistant of all cancers to chemotherapy treatments and has less than a one percent survival rate. There is still no effective treatment and a child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago.

About Alex’s Lemonade Stand Foundation
Alex's Lemonade Stand Foundation (ALSF) emerged from the front yard lemonade stand of 4-year-old Alexandra “Alex” Scott, who was fighting cancer and wanted to raise money to find cures for all children with cancer. Her spirit and determination inspired others to support her cause, and when she passed away at the age of 8, she had raised $1 million. Since then, the Foundation bearing her name has evolved into a national fundraising movement. Today, ALSF is one of the leading funders of pediatric cancer research in the U.S. and Canada having raised more than $150 million so far, funding nearly 1,000 research projects and providing programs to families affected by childhood cancer. For more information, visit AlexsLemonade.org.

About Storm The Heavens Fund
The Storm The Heavens Fund was formed after Philomena “Bean” Stendardo passed away in 2017 from DIPG. At Storm The Heavens Fund, we believe there is no cure greater than the fight for our children’s right to grow up to be adults. Our mission is to advocate for our children diagnosed with DIPG by raising funds for desperately needed research and spreading awareness. 0% survival is unacceptable, we must do better.