Gavin Abdelmessih goes from super hero to super-tired in seconds most days. It is a side effect from the toughest fight of his 4-year-old life: leukemia and two years of chemotherapy.
“When you go in (to the hospital) what do the nurses do,” Jacqueline Abdelmessih asked her son. “They poke me,” he responded.
Gavin’s mother and father actually feel fortunate in a way because their son’s cancer comes with an 80 percent survival rate. Other children with different cancers have less than a 40 percent chance and hardly enough research to dream about ringing the end of treatment bell.
“We’ve seen lots of children that we’ve interacted with and become friends with that have passed away not because there’s nothing they can do, but because the funding isn’t there,” Sam Abdelmessih, Gavin’s father said. “The focus isn’t there.”
For that reason, the Abdelmessih’s started Gavin’s Galaxy, a non-profit created to help cure funding disparities in cancer research.
The National Institute of Health spends more on adult cancer research than that of children, according to the St. Baldrick’s Foundation. Cancer in adults is more common and its clinical trials less risky, researchers said.
Dr. Will Parsons, a pediatric oncologist and researcher, works for one of the largest pediatric cancer centers in the country, Texas Children’s Hospital. For every 10 grants his staff applies for they win just one, he said.
“It’s a tough time for medical research in general,” Dr. Parsons said. “There’s a lot of uncertainty about (National Institute of Health) funding and federal funding.”
Children’s Oncology lost roughly $10 million in federal funding between 2004 and 2015, according to the American Cancer Society.
Money from pharmaceuticals mostly comes when a drug nears approval, according to researchers. So, philanthropy is becoming more important, Dr. Parsons said.
The Abdelmessih’s travel once a month to the statehouse in Austin or Capitol Hill in Washington D.C. to push for new legislation. They support the Race For Children and STAR Acts. The proposed laws could create incentives to make more cancer drugs for children and allow more pediatric trials.
Meanwhile, Texas Children’s is wrapping up trials on a new DNA sequencing treatment.
“We’ve been able to create what I call genetic encyclopedias of each of these cancers,” Dr. Parsons said.
Still, Gavin’s Galaxy remains focused on bringing a world of change to childhood cancer research.