New collaborative fundraising effort focuses on AYA cancer

Leaders from Case Western Reserve University and University Hospitals this evening announced a new collaborative fundraising effort focused on Adolescent and Young Adult (AYA) cancer. The news came as Chuck and Char Fowler announced their third major philanthropic commitment aimed at defeating the disease that claimed their 14-year-old daughter, Angie, in 1983.

Inspired by the new collaboration and the Fowlers' generosity, an anonymous donor also made a $5 million contribution to support the Angie Fowler Adolescent & Young Adult Cancer Institute at University Hospitals (UH) Rainbow Babies & Children's Hospital.

"Even as our nation has made immense strides in improving survival rates for pediatric and adult cancer patients, we have made far too little progress for teens and young adults," Case Western Reserve University President Barbara R. Snyder said. "Chuck and Char Fowler have helped bring unprecedented attention and resources to this critical need, and we feel privileged to build on their efforts with this new collaborative initiative."

Thomas F. Zenty III, chief executive officer of University Hospitals, noted that the funds for Angie's Institute are earmarked for completion of the Institute's 7th-floor inpatient area. The donor's gift is anticipated to inspire an additional $5 million in support from the philanthropic community by matching dollar for dollar gifts to Angie's Institute that range from $25,000 to $1 million.

"These gifts will amplify UH and CWRU as national leaders in treating and curing adolescent and young adult cancers," Zenty said. "This extraordinary philanthropic support for both research and clinical care promises to significantly advance treatments for our young cancer patients and AYA patients around the world."

The Fowlers' $6.7 million pledge to Case Western Reserve University will support an extraordinary array of state-of-the- art research initiatives designed to develop breakthrough solutions to treat and cure AYA cancers, the leading cause of disease-related death for this age group.

Among other activities, the funds will accelerate development of medicines and therapies to stop the spread of tumors in adolescents and young adults; develop unique treatments to cure AYA cancers in a way that reduces chances of recurrence; and apply recent discoveries in MRI technology to the treatment of brain cancer in AYA patients. In addition, the effort also aims to bring increased focus to immunotherapy initiatives - that is, those that use the body's immune system to defeat cancer without the sometimes devastating toxicity involved in chemotherapy regimens.

Chuck and Char Fowler's first philanthropic commitment to defeating AYA cancer came in 2007, when they gave $1 million to UH Rainbow Babies & Children's Hospital to support the nation's first-ever chair in AYA cancer. With an additional $500,000 from the Rainbow Babies & Children's Foundation, the hospital created the position and named pediatric oncologist Joe Matloub, MD, as the inaugural Angie Fowler Chair in Adolescent & Young Adult Cancer Research.

Four years later, Chuck and Char Fowler were joined by their daughters and sons-in-law, Chann and Ed Spellman and Holley and Rob Martens, in making a $17 million commitment to create the Angie Fowler Adolescent & Young Adult Cancer Institute at University Hospitals (UH) Rainbow Babies & Children's Hospital.

Angie's Institute, - fully integrated with University Hospitals Seidman Cancer Center and Case Comprehensive Cancer Center - features a dedicated outpatient treatment facility, which opened this spring. The newly renovated space is one of the first in the country to offer separate, age-appropriate areas, technologies and amenities for babies/children and adolescents/young adults. In addition, it also includes the soon-to-be-constructed expanded inpatient unit for pediatric and young adult patients, which will feature all private rooms with sleeping accommodations for parents, along with a rooftop garden at UH Rainbow Babies & Children's Hospital.

The Fowlers' newest commitment represents the first-ever creation of a center focused on AYA cancer within a Comprehensive Cancer Center, a designation the National Cancer Institute has given to just 41 centers across the U.S. The Case Comprehensive Cancer Center - a collaboration among Case Western Reserve, Cleveland Clinic and University Hospitals Seidman Cancer Center - involves 350 scientists and physicians dedicated to understanding how to prevent, treat, and cure all forms of the disease. The Center today has nine areas of focus, among them Genetics and Personalized Medicine, Prostate and Kidney Cancers, and Breast Cancer. The Fowlers' investment will advance efforts to make AYA Cancer another priority, both because of the region's existing strengths in the area and the overwhelming need for additional efforts.

The National Cancer Institute reports that AYA cancer survival rates have remained stagnant since 1975 for a range of reasons, among them a lack of awareness among both young people and physicians. When high school student Steven Giallourakis found his back and legs starting to feel tight while playing basketball, both he and his doctors presumed the issue was muscular and referred him to physical therapy. It wasn't until Steve began having trouble even lying on his back that doctors probed for another cause - and found a softball-sized tumor near his spine.

"Who thinks a 15 year-old has cancer?" said Giallourakis, now 23 after twice triumphing over cancer as well as complications that included a snapped titanium rod in his back and graft-versus-host disease. A finance major at Cleveland State University, he recently became the Ohio representative for the national nonprofit, Teen Cancer America. He is driven to raise awareness and advocate for approaches that combine attention to patients' psychological experiences and the need for approaches that address their unique stage of life. At the same time, he appreciates the vital place of pure science.

"You want to find a cure," he said. "You want to prevent it. You can't do that without the research… Everything has to go together."

John J. Letterio, MD, a Professor of Pediatrics at Case Western Reserve and Chief of the Division of Pediatric Hematology/Oncology at UH Rainbow Babies & Children's Hospital, made AYA cancer a primary focus when he came to Cleveland from the National Cancer Institute in 2006. Over time, the ranks of faculty and physicians whose work applies to AYA cancers has grown steadily, along with a powerful appreciation of the possibilities inherent in interdisciplinary collaboration.

"Our job ultimately is to advocate, to take on the biggest challenges," said Letterio, also a member of the Case Comprehensive Cancer Center. "This {AYA cancers] is a place where we could make a real difference."

Additional causes of stagnant survival rates include lack of health insurance among this age group, extremely low rates of participation in clinical trials that test the safety and effectiveness of emerging treatments, and biological differences in the way cancers affect adolescent and young adult patients. New insights available through genomics and imaging, however, offer the promise of ever-more accurate understanding of precisely how certain cancers affect AYA patients - and, in turn, more precise approaches to defeating them.

Researchers and physicians from the Case Comprehensive Cancer Center described some of these advances at an event that followed the announcement of the Fowlers' pledge and anonymous donor's challenge grant.

"We are the pacesetters for what's happening in this realm," Letterio said.

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