This Week in Neuroblastoma – 6/3/13

This month brings another heart breaking good-bye to a neuroblastoma fighter.

We also learn of some really cool developments in NB research and get some much needed motivation from a few awesome people.

Here’s this week’s links…

Kids – Why We Fight

Ryan Wright

We’re so sad to say that 22-month-old Ryan Wright has passed away after battling neuroblastoma for almost all of his short life. His parents held an intimate service for him with close friends and family. They honored Ryan’s memory by showing up resembling his favorite toy, Mickey Mouse. Hayley and Darren Wright came dressed in red Mickey Mouse shorts, mouse ears and yellow shoes. We’re sure that made Ryan smile. They plan to give him a Mickey Mouse headstone that has been funded by donations. Family friend Ev Boothby is also in the process of starting a charity called Ryan’s Wish, which will aim to raise enough money for a center to be built in North Walsham where NB sufferers and their families can gather and receive counseling.

Non-Profits / Events / News

Charlotte Swings

Charlotte Rose Kelly’s family is holding a really cool fundraiser in her memory this month. Charlotte died at the age of 5 after a 2 1/2 year battle with neuroblastoma. One of her favorite things to do was swing at the park. The fundraiser, taking place on June 7th, will help to raise the $35,000 – $40,000 needed to open the new play area. They hope to have the park opened by August 14th, which would have been Charlotte’s 7th birthday.

SWAT Team Fulfills Conner’s Wish

8-year-old Conner Arneson was diagnosed with neuroblastoma when he was 5. Three years later, he’s still fighting. He’s gone through several rounds of chemo and still has a long road ahead of him. Family friend Mark Tappan knew of Conner’s wish to take a ride in a SWAT truck and did what he could to make it happen. He received help from nearly 50 teams! On May 21st, Mark picked Conner up at his home and drove him to a nearby ice cream shop, where they stopped for a treat. Mark was more than happy to be able to bring Conner some joy. He said, “It’s such an incredible battle. We’re in these tense situations where we fight for a short amount of time. But these guys, they fight every day.”

Charity Dinner for Sam Shaw

Fundraising is still underway to help Sam Shaw get to the US for vital treatment for his neuroblastoma. On June 6th a charity dinner will be held. There will be a raffle, silent auction and delicious three course meal! Event organizers are hoping to raise up to £10,000 for the Sam Shaw Appeal. Best of luck to them!

Kids Hold Lemonade Stand

The weather didn’t quite cooperate, but the students from the Chaska Stepping Stones program proudly ran their lemonade stand anyway. They set up the stand through Alex’s Lemonade Stand, a national program that supports childhood cancer research, to support a local boy named Brayden who is 6-years-old and has neuroblastoma. Plenty of drivers ignored the dreary weather and stopped for lemonade to support the kids. Way to go guys!

Grow up, Cancer!

Telling cancer to grow up sounds kind of silly, right? But in a round about way, that is exactly what a team of scientist are trying to make happen. Through years of experimentation and research it has been found that cancer sells seem to be stuck in a perpetually immature state. When left in this state, they multiply. By using certain chemical compounds to mature cancer cells, researchers have been successful in treating certain forms of cancer, like acute promyelocytic leukemia. It is hoped that through this new screening approach, they can coax HDAC1/HDAC2 inhibitors in neuroblastoma cells to differentiate (or mature.) This could lead to an alternative treatment for NB that will be less toxic to patients.

Running for Jamie

Vicky and Poppy Inglis participated in the Race For Life on Sunday, June 2nd in memory of Jamie Inglis. Seven-year-old Jamie passed away in January after a four year battle with neuroblastoma. Since then, Vicky has become the secretary of the parent’s group of the Neuroblastoma Alliance. “I could never see ourselves not doing anything in Jamie’s memory”, Vicky says. She wanted to find a way for she and Poppy both to remember Jamie, and the Race For Life presented the perfect opportunity. They raised more than £300 for cancer research, tripling their initial goal.

Pediatric Oncology Award

For the past 11 years, ASCO has given the Pediatric Oncology Award and Lecture to an oncologist who has done significant scientific work in the field of pediatric oncology throughout his or her career. This year, the honor has been given to Dr. Garrett M. Brodeur, MD, from the Children’s Hospital of Philadelphia (CHOP). Despite holding many other respectable titles and having won many awards, Dr. Brodeur says that the Pediatric Oncology Award and Lecture “means more to [him] than any other award [he has] received to date. It is recognition from [his] peers for [his] contributions to the field. This means a great deal to [him], particularly coming from a great organization like ASCO.” Congratulations, Dr. Brodeur, and thank you for your hard work!

Alex and Edie

Earlier in this week’s links we shared a fundraiser put on through Alex’s Lemonade Stand. The organization was started by one little girl’s desire to help others, like herself, that were suffering from cancer. In 2000, shortly after her 4th birthday and her first stem cell transplant, Alex held a lemonade stand in hopes of raising money for a cure. People from around the world were moved by Alex’s courage and strength and with their help, Alex and her friends raised close to a million dollars by 2003. Sadly, in 2004, Alex lost her battle with neuroblastoma. Her passion for helping others lives on through the Alex’s Lemonade Stand Foundation, which has funded nearly 300 cancer studies, some of them at CHOP (Children’s Hospital of Philadelphia). This is where we meet Edie, a 3-year-old who is wise beyond her years, and also an NB sufferer. After exhausting their options of chemo and surgeries, Edie’s parents agreed to an experimental treatment at CHOP that had been funded by the Alex’s Lemonade Stand Foundation. Miraculously, the treatment worked and after four weeks Edie was given the news that her tumor was gone.

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