The Richmond Times-Dispatch had Connor's Heroes on the cover of the Metro Business section. Reporter Katie Demeria did an excellent job in her interviews with Lisa, Callen's mom and Dr. Corey. More importantly, the article sheds light on why Connor's Heroes is passionate about research being conducted in Richmond. You fuel our passion with your gifts of time, treasure and donations. The complete article is below.

Connor's Heroes nonprofit hopes to encourage pediatric cancer research in Richmond
By KATIE DEMERIA Richmond Times-Dispatch Feb 19, 2017

The Tyson family didn’t notice the backpack right away.

It had been left in their hospital room during their first week of treatment for Callen, 4 years old at the time, who was diagnosed with leukemia in 2014.

“Then my husband loaded up the car and when we came home here was this bag full of all sorts of things that we didn’t quite know we were going to need yet or how we were going to need them,” said Dr. Katie Tyson, Callen’s mom and a practicing gynecologist.

The backpack had everything from hand sanitizer and tissues to entertainment items for Callen. There were arts and crafts supplies and books — things designed to pass the time during treatments that could last anywhere from 45 minutes to more than 10 hours.

But the bag also had a certificate for pizza for the next time the family was at the hospital, and another for a house cleaning that they’d need when physicians told the Tysons to go home and clean their doorknobs because Callen had no immune function.

That was the Henrico County family’s first introduction to Connor’s Heroes, a Midlothian-based nonprofit organization.

Named for an area boy who survived a leukemia diagnosis, Connor’s Heroes is focused on supporting central Virginia families facing childhood cancer diagnoses, starting with backpacks and tote bags delivered when children are first diagnosed.

But since its founding 11 years ago, the group has expanded its mission, choosing to raise funds for and encourage childhood cancer research taking place in Richmond.

“I’m hopeful that as more and more people in the local community learn that there is pediatric cancer research happening right here in Richmond, that they don’t have to send a check to St. Jude’s or St. Baldrick’s, they can actually donate to Connor’s Heroes and it goes right to research that’s happening here,” said Lisa Goodwin, the group’s executive director and Connor’s mom.

Last year, in honor of its 10th anniversary, Connor’s Heroes completed a $100,000 five-year pledge it made in 2013 to benefit Dr. Seth Corey’s research, along with an additional $40,000 gift.

Corey is a pediatric cancer researcher and the chair of pediatric oncology with the Children’s Hospital of Richmond at VCU and VCU Massey Cancer Center. He joined VCU Health in 2015, thanks in part to an endowment that Connor’s Heroes helped fund.

“We are continuing to be committed to raising money to support his research and are hoping to do more and more,” Goodwin said.

***

Deep in the basement of Sanger Hall on VCU Health’s downtown campus, a small, humid room holds hundreds of tiny fish.

When he joined VCU, Corey brought with him his lab of zebrafish, a tropical freshwater fish he uses to study a pediatric bone marrow failure disorder called Shwachman-Diamond syndrome, or SDS.

“SDS is a pediatric syndrome where the kids are typically short, they have an inability to absorb nutrients, they have a shortage of white blood cells called neutropenia, and they have a thousand-fold risk of developing leukemia,” Corey said.

Corey and his team are able to manipulate the zebrafish genes so the fish have features similar to children with SDS.

“The idea is to understand why this disease occurs, why are the kids small, why do they fail to get their nutrition and, most importantly, why do they develop leukemia?” he said.

Leukemia, a cancer of the blood and bone marrow, is the most common form of pediatric cancer. The American Cancer Society estimates that there will be more than 62,000 leukemia diagnoses in 2017.

Connor’s Heroes has a fund with which it helps families who have to travel out of Virginia for treatment or a second opinion. But, Goodwin explained, the hope is to allow for more research to take place in Richmond so breakthroughs can happen here.

If more research takes place in Richmond, then more clinical trials can happen here as well and families would not have to leave the city or state to find what they need. Especially for children diagnosed with rare cancers, clinical trials are vital.

“And there’s so much more that can happen if the funding is there,” Goodwin said.

Pediatric cancer research gets a fraction of the funds for cancer research doled out by the National Cancer Institute, which is part of the National Institutes of Health. Only about 4 percent goes to pediatric cancer.

“Our kids deserve more than 4 percent of federal funding,” Goodwin said.

Corey pointed out that, in part because of low funding rates through the National Institutes of Health and because pediatric cancer gets such little support, most researchers know they cannot depend solely on federal funding.

“Actually, most of the funding for cancer research really comes from philanthropic groups like Connor’s Heroes,” he said. “And that’s how it’s going to be. And the nature of that funding is actually good because they will fund riskier ventures and things that wouldn’t pass muster with an NIH study section.”

Corey is on an NIH study section, which helps to determine which research ideas will receive funding. He said that if ideas are too outlandish or do not have enough preliminary data, typically they will not get funded.

But groups like Connor’s Heroes will fund those ideas, which may eventually lead to federal funding down the road.

“Now that we have an endowed chair, it’s not just, ‘Let’s raise money for cancer research,’” Goodwin said. “Now it’s, ‘Hey, it’s happening, and the more money we can raise and the more awareness we can promote, the more can be done to help our kids.”

***

Every year since its founding, Connor’s Heroes budget has incrementally increased.

Last year, it raised $410,000, compared with around $300,000 in 2013, Goodwin said. In 2017, the nonprofit is aiming for $450,000.

“Our goal is to continue to engage our community of heroes and encourage them to help us support families,” she said. “We’re providing direct support to families of a child battling cancer in central Virginia and giving them hope for the future by funding research.”

For the past several years, it has been budgeting about $20,000 for research, some years doing more. Now that it has met its $100,000 pledge, the group is aiming to devote even more to cancer research.

But in addition to that work, Connor’s Heroes is directly helping families battling childhood cancer diagnoses.

It helps about 100 children in treatment every year. Each family gets a hero backpack for the child, such as the one the Tysons received, as well as a tote bag.

“For some families, that’s the only support they need, and others take advantage of literally every program we have,” Goodwin said.

The programs include nights out for parents; partnering with companies to provide tax or chiropractic services free of charge; providing meals or doing yard work for families; and partnering children and their siblings with mentors to take them on special outings to baseball games or movies, or even just a bike ride.

The group also offers bereavement support to families who lose children, giving a $1,000 donation to the family’s funeral home to cover costs.

***

Callen has been receiving chemotherapy every day for nearly three consecutive years. He is on a 39-month regimen, but to complicate his situation further, in March 2015 he contracted a normal childhood virus that he has not been able to kick because his immune system isn’t strong enough.

He has acute lymphocytic leukemia, which is one of the most common forms of the bone cancer. When he finishes his chemotherapy in June, the next step for his family will be watching Callen to make sure the cancer stays in remission.

But just beating the cancer is only one part of the battle for families like Callen’s. The side effects of chemotherapy can be lifelong.

“We’re already beginning to see it,” Tyson said. “He just went through an educational evaluation, and there are some things he simply cannot do.”

Callen has had 31 rounds of chemotherapy injected into his brain and spine.

“We don’t know what’s going to come back and follow him,” Tyson said. “We really need researchers to develop medications that are targeted for kids. Part of the reason pediatrics exist in the first place is because they’re not little adults and you can’t just give them what adults get.”

Goodwin is hoping to encourage the Richmond community to take pediatric cancer research under its wing so the city can become the leader of cancer research.

“My biggest goal right now is to encourage this generous community that we have in central Virginia — and Richmond in particular — to encourage them to help support the research that’s happening here,” she said.

Pediatric cancer is far rarer than adult cancer. About 15,000 children in the U.S. receive a cancer diagnosis annually, compared with 1.7 million adults.

But just because it’s rare, Tyson and Goodwin contend, does not mean it deserves less funding. For children, lifetimes are at stake.

“We’re not just looking to get five or 10 years of quality life,” Tyson said. “We’re hoping for 80 or 90.”

kdemeria@timesdispatch.com, (804) 649-6813, Twitter: @katiedemeria
Photos: Mark Gormus and James H. Wallace / TIMES-DISPATCH