Some kids take it easy in the summer, but Alex Tingley isn’t one of them. The 11-year-old Bradford resident recently returned from Washington, D.C., where he helped advocate for the Give Kids a Chance Act of 2025.

The act aims to help remove barriers to pediatric drug development and speed therapies for children who need them by incentivizing pediatric research through changed pediatric drug laws.

Alex Tingley placed a pin over Bradford in a map in U.S. Sen. Dave McCormick’s office, as the first Bradford residents to visit the Republican Pennsylvania senator. 

Photo provided

There are four provisions to this bill. The Creating Hope Act incentivizes pediatric research by expanding the FDA priority review voucher program, funding for which expired at the end of 2024. It also includes the Innovation in Pediatric Drugs Act, which ensures pediatric studies for possible new treatments are completed on time. A previously introduced Give Kids a Chance Act would allow researchers to study new combinations of cancer drugs. Finally, it includes the RARE Act, which clarifies Congress’s interpretation of the Orphan Drug Act to ensure pediatric drug research and development is included when reviewing newly approved drugs that don’t impact pediatric populations.

The legislation hit home for Alex, who was diagnosed with cancer at just 4 years old. After years of chemotherapy and a slew of medications, he is cancer-free.

“He was diagnosed in 2018 on the day after Christmas,” recalled his mom, Katie Tingley.

Members of Alex’s family noticed he suffered from a swollen lymph node above his collarbone, prompting a trip to the doctor.

“They did some bloodwork and didn’t tell us much other than we needed to come into the ER because he was being sent to Buffalo (N.Y.),” said his mother. “Once we were up there, they told us he had leukemia.”

Alex and his family spent the next month at Oishei Children’s Hospital, where he began treatment under the care of Dr. Kara Kelly, chair of the Roswell Park Oishei Children’s Cancer and Blood Disorders Program.

After about two weeks, the family was asked if they would consider participating in a research study.

“It was a hard decision and there was a lot of scary paperwork involved but I am so glad we decided to go for it,” said Katie Tingley.

The findings of that study became the key to Alex’s treatment after he was found to have a rare genetic mutation that made his leukemia particularly resistant to chemotherapy.

“Dr. Kelly came to us at that point and explained that she had high hopes he could still be cured, but his treatment would need to be much more intensive due to the mutation,” his mother said. “He went from being very low-risk to very high-risk immediately.”

Alex and his team continued on his treatment journey, but another problem arose when he suffered an anaphylactic reaction to one of his medications.

“I believe they told us that about 20 percent of people have this reaction, so they knew what backup drug to use,” Katie said. “The problem was that the backup drug is only made in one place in the United States and there was a shortage.”

Alex needed 52 doses of this medication to complete his treatment.

Thankfully, Dr. Kelly stepped up to the plate. Alex’s grateful mother said she doesn’t know what they would have done without Dr. Kelly.

“She found several doses just sitting on a shelf in Rochester and had them shipped to Roswell,” Katie said. “It wasn’t enough for his full treatment, but it was enough to keep him going until she could find more.”

Dr. Kelly found the rest of the needed medication in the United Kingdom and had it shipped stateside.

“We had to sign a lot more scary paperwork before Alex could receive that set of doses because, of course, they weren’t approved by the FDA,” said Tingley.

The rest of Alex’s treatment went smoothly, his mother said. In February 2021, after two and a half years of treatment, he rang the Victory Bell in Roswell. Since then, his cancer has thankfully remained in remission.

When Alex and his family went to Washington, drug shortages were a major topic of discussion. Another topic was the difficulties faced by Pennsylvania residents who have to seek treatment across state lines.

“We had some difficulties with his insurance because we live here but had to have treatment in New York,” said Tingley. “Unfortunately, the reality for those of us who live in this rural area is that we will be sent to Olean or Buffalo for treatment.”

Another topic of discussion was the need to fund pediatric cancer research to find better drugs and new combinations of drugs to treat children.

“The drugs they use are all designed and tested on adults,” said Tingley. “Doctors and nurses tailor these treatment plans to a child’s body but that can cause difficulties.”

While treating children with combinations of drugs is sometimes frowned upon, Tingley noted that Alex required 12 different drugs before he was cancer-free.

“That is another thing we need to fund is more research trials exploring drug combinations,” she said. “We need to support the doctors, nurses and research teams trying to come up with solutions so that one day we will hopefully have a 100 percent cure rate.”

During their trip to the Capitol, the Tingley family was joined by medical professionals such as Dr. Kelly and several other families of pediatric patients. Alex and company met with U.S. Rep. Glenn “GT” Thompson, R-Pa.; Rep. Nick Langworthy, R-N.Y.; and staffers from the offices of Rep. John Fetterman, D-Pa.; Sen. Kristen Gillibrand, D-N.Y.; and Sen. Dave McCormick, R-Pa.

Alex Tingley, at right, with U.S. Sen. Kirsten Gillibrand, D-N.Y. Joining Tingley is Jonah Kuper, center, and Colt Matz.

Photo provided

Watching Alex speak at the Capitol was a proud moment for his mother.

“He isn’t one to always speak up around strangers, but he did share a bit about how hard it was to have cancer and that he hopes they will help other kids who are currently going through it,” she said. “I think having the families and kids sitting right there truly helped drive home the issues.”