21 Jan $10,000 grant given to help ensure to pediatric drug trial access
Funding of an experimental pediatric cancer drug has drawn together two families with local ties.
In early December, Lisa Ward, of Wamego, reached out to Aubrey Abbott Patterson, Hutchinson Community Foundation president and CEO, seeking a match to Greater Manhattan Community Foundation’s donation to a fundraising drive led by Ward on behalf of Wichita’s Dragon Master Foundation, a nonprofit that supports brain tumor patients and research for cures.
The ongoing effort is aimed at ensuring continued access to an experimental pediatric cancer drug known as ONC201 that targets patients battling Diffused Intrinsic Pontine Glioma (DIPG), an aggressive incurable form of cancer. Lisa’s son Jace was diagnosed with DIPG in May and receives the drug.
Patterson then asked David Neal, of Hutchinson, if he would consider making a $1,000 grant from the John & Michael Neal Fund for Cancer Research at Hutchinson Community Foundation. David’s father, John, an attorney and former owner of Hutchinson-based Ineeda Cleaners, and brother, Michael, both lost their lives to cancer.
Not only did Neal immediately agree but he also wanted to offer more.
“When we started the John & Michael Neal Fund for Cancer Research,” Neal said, “we wanted to do a couple things: 1). provide funding for cancer research projects and experimental drugs, and 2). support for families battling cancer. I think this opportunity does both.”
So a $10,000 lead gift was made with the hope of encouraging others to help meet a goal of raising $250,000 by the end of the year.
“Having a brother who battled childhood cancer at a time when there weren’t effective treatments – but now there are – I know the search for treatments (especially those that help prolong the progression of the disease) is incredibly urgent and important to those families,” Neal said.
Lisa Ward and her husband, Roger, lived with their family in Inman until moving to Wamego in 2010. Their son Jace, now 20, was in sixth grade at the time. Now a student at Kansas State University, he began complaining of vision problems after he was involved in an automobile accident earlier this year. In May, he was diagnosed with DIPG.
Most patients don’t live more than a year after diagnosis, according to The Diffuse Intrinsic Pontine Glioma Resource Network.
Jace eventually began taking ONC201, shown to slow progression in some clinical trials. Since beginning the treatment, his symptoms have improved, allowing him to live the relatively normal life of a college law student, according to Lisa.
Though not a cure, ONC201’s promising results could be a breakthrough in the battle against a cancer for which treatment advancements have been scarce, according to Lisa. Because he’s considered an older DIPG patient, though, Jace is three months too old to fit into the trial and must access the drug via an expanded program.
Funding for the program, however, has run out, meaning Jace and other participants in Kansas and around the country will lose access to the drug. Working with the Dragon Master Foundation and private and community foundations, the Wards and others are now racing to raise enough money to keep the drug available in 2020. They are about $52,000 away from their goal.
“I knew this was a cause that David cares deeply about, and it was my pleasure to connect two people whose families have been touched by cancer,” Patterson said.
Those who wish to donate may visit the Dragon Master Foundation website at www.dragonmaster.org, the Dragon Master Foundation Facebook fundraising page or email firstname.lastname@example.org. Jace’s progress can be followed on Facebook at JaceWard – #Tough2gether.