Lelia’s Hospital Room
Little Lelia loves all things with the letter "P." When her family registered with Connor's Heroes, they told us that Lelia's favorite things are "Play-Doh, princesses, Peppa Pig and painting." With that info, volunteers - Samantha and Olivia - transformed Lelia's room into a pink, puffy playroom on the VCU Massey Cancer Center Bone Marrow Transplant Unit. What makes this story more special is that Olivia is the big sister to her own childhood cancer hero: her brother Callen. Thanks to your generosity, we can help Lelia and her family through each day as she is in treatment.
Connor's Heroes is proud to be there with the children admitted into this adult floor. So far this year, three of our childhood cancer heroes were treated on the BMT unit. Erin, our Assistant Program Coordinator, says this number of young patients is slightly ahead of the number of children whom we helped last year.
Sponsor Spotlight: Valentine Properties
Thank you to Austin and Heather Bergman who are the owners of Valentine Properties. They are a wonderful couple who are passionate about giving back to the community. They appreciate the personal touch that Connor's Heroes brings to the children in treatment for cancer. They believe that Dr. Corey's research is necessary in finding cures and improving treatments. It is an honor to have them as the PHOTO BOOTH SPONSOR for the 2017 Heroes Art Ball. Grab your friends and step inside the photo booth for a snap of your fun time at the Heroes Art Ball. Tickets are on sale for the gala. Thanks to Valentine Properties and our corporate sponsors, your ticket pays for our programs, outreach and funding for research. http://501auctions.com/heroesartball
Thank you to Hot Shotz for the photo booth! https://www.hottshotzphotobooth.com/
Sponsor Spotlight: Strum Group
As you enjoy the Heroes Art Ball in the beautiful rotunda, there's another party happening around the corner. Tucked away in a room to the right of the stage, is the HEROES ROOM. It is a playroom, break room, and game room for the kids who are presenters at the Heroes Art Ball. A group of energetic teens volunteer to play with the kids (trust me, they need a lot of energy to keep up!). The kids have a great time together thanks to the generosity of its sponsor, The Strum Group, a real estate agency in Richmond Va. lead by James Strum. You give these children much to smile about because you are supporting the programs that help them. You do that when you make a donation, purchase your tickets to the Heroes Art Ball or place a winning bid. Bookmark this page for tickets and online auction: http://501auctions.com/heroesartball
February Art Session
Last week, 17 childhood cancer heroes and their brothers and sisters spent the afternoon creating masterpieces for the 2017 Heroes Art Ball. You won't believe the imaginative and creative pieces that they created at the studios of the Visual Arts Center. So colorful and joyful! Every dollar you spend at the Heroes Art Ball will help our hero families and give much needed funds to move science forward. You can help Dr. Corey and his researchers make discoveries in treatments and cures for childhood cancer. Our young heroes are excited to show off their creative creations at The Heroes Art Ball on May 5th at the Science Museum. Tickets are on sale now at a discounted rate. You can purchase them before the price increases on April 1.
Pic Cred: Armaan Omarzai
A Conversation with Dr. Austin
Last month, we heard from Dr. Corey, the pediatric hematology/oncology division chief, talk about his research using zebrafish. Now, I'd like to share a conversation with the "next generation" of clinician scientists. Meet Frances Austin, M.D. She is a Pediatric Hematology/Oncology Third-Year Fellow at Children's Hospital of Richmond at VCU. She is focusing on solid tumors, called sarcomas, which can occur both in the pediatric population (Ewings Sarcoma, Rhabdomyosarcoma, and Osteosarcoma for example) and in adults.
Lisa: Dr. Austin, you recently completed some exciting research — some might even say you had a "breakthrough."
Dr. Austin: We had a patient who had two different tumors. This patient had a mutation in the P53 gene, which we know is a gateway gene to cancer. When the P53 gene is working properly, it kills any bad cells. When it is mutated, it loses its function to stop the cancer cells from developing and multiplying. I was able to pinpoint his mutation explaining why he developed two tumors. No one has ever found this mutation. Since we know that as many as 15% of kids are carriers of the P53 mutation, I'm hoping that this knowledge will be the foundation for continued sarcoma genetic screening and research.
Lisa: How has Dr. Corey's arrival influenced you?
Dr. Austin: Dr. Corey lit a fire under me and has been incredibly supportive. He gave me the chance to take on a research project that was interesting to me and provided guidance and support along the way.
Lisa: What's up next for you?
Dr. Austin: Pediatric Blood & Cancer accepted my paper for publication. (Editor's Note: Pediatric Blood & Cancer is the official journal of ASPHO and the International Society of Pediatric Oncology). We are in the process of developing a solid tumor program. I'm also hoping to collaborate with an adult sarcoma group here at VCU in their work to develop clinical trials for Ewings Sarcoma and Rhabdomyosarcoma. We also have created a combined tumor board to discuss tumors that affect kids and young adults. With combined resources, we can look at a more well-rounded treatment. I'm hopeful that I will be able to obtain a grant to help me move forward with this exciting research. I'm also waiting to learn that I have been invited to stay as an assistant professor.
Lisa: Your interest in cancer research is based in a personal experience that you don't share very often.
Dr. Austin: Yes, I was always interested in genetics and molecular biology. I worked in a lab before and during college and planned to go to medical school. Just prior to taking my entrance exams, I was diagnosed with Hodgkins Lymphoma. I had to put medical school on hold while I underwent six months of chemotherapy. This experience was incredibly eye-opening and helped me to better understand the huge role that research plays in the treatment of cancer. I ended up working in a research lab for two years before going to medical school. After a four-year surgical residency, I realized I was missing the kids, so I started a pediatrics residency. All of these experiences helped me to understand how much patient care can govern research. I have a strong desire to decrease symptoms and improve outcomes for our youngest cancer patients.
Lisa: How do you spend any free time you might have?
Dr. Austin: My husband, who is a pediatric neuro-radiologist at VCU, and I have two young children who keep us incredibly busy running around Richmond. We really love the city and are super excited about staying.
Dr. Frances Austin received her medical degree from Drexel University College of Medicine. She is a Pediatric Hematology/Oncology Third-Year Fellow at Children's Hospital of Richmond at VCU.
In 2007, Connor’s Heroes, through the support of our donors, created an endowment fund and established the Connor's Heroes Pediatric Cancer Research Fund. This led to the hiring of Dr. Seth Corey in 2015 to head up the work. Connor's Heroes also supports the Jamie Hess Pediatric Bone Marrow Transplant Research Fund. These are the only funds in Virginia that are directly supporting the research efforts of Dr. Corey and his team of scientists at VCU Massey Cancer Center.
Sponsor Spotlight: Virginia Business Systems
What an honor to have Virginia Business Systems as the Presenting Sponsor for the 2017 Heroes Art Ball. I could go on and on about our friendship with President Jim Dotter. He and his family have been supporting Connor's Heroes for many years. This a fun video that shows the camaraderie of the company and their dedication to the community. About 1:25, you see Jim sporting his Connor's Heroes shirt! Come meet Jim and the gang at The Heroes Art Ball on May 5.
Connor’s Heroes In Richmond Times-Dispatch
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, 2017The 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
Jurassic Park for Nayla
Callie and Courtney, CHF volunteers, did an amazing job of transforming this hospital room into Jurassic Park. Do you see the t-rex peeking out of the box? The dinosaur footprints? Who is this amazing hero? It's 10-year-old Nayla. He was admitted to the Bone Marrow Transplant Unit in late January and is expected to be there for about two months. His parents are driving between VCU and their home in Fredericksburg. Easily, 100 miles round trip. Thanks to your generosity, they will have plenty of gift cards for the gas needed to go back and forth. Since the family is spending nights on the unit, they will rest under cozy, handmade fleece blankets. Erin gave mom and dad the journal we designed for our BMT patients. They can write in it every day and keep track of the information and emotions of being in the BMT unit. Thank you to Callie and Courtney for showing tremendous creativity in decorating the room. Special shout out to little sister, three-year-old Tehmeena.
January Art Session
If you walked past the studio at the Visual Arts Center a few weeks ago, you would have seen a group of kids giggling, playing, and being goofy. You know, kids being kids. Look closely and you'll see that the kids are our childhood cancer heroes. They were at the studio spaces to make art. Not just any art. Art that you can bid on at the upcoming Heroes Art Ball. They worked with watercolors. They painted a cool board for everyone's favorite, corn hole. They hand-dyed pillowcases. Guiding them were talented artists Frankie Slaughter and Camilo J. Perdomo and our wonderful volunteers,
Nora, Jillian, Makay, Katie, Todd, Natalie, Maggie, Sarah, Melissa, and Celia.
Thank you for supporting Connor's Heroes and giving them a day to create fun memories. The 2017 Heroes Art Ball is May 5 at the Science Museum of Virginia. We will post information on purchasing tickets, sponsors and auction items at the event's official site: http://501auctions.com/heroesartball