This Week in Neuroblastoma – 8/5/13

Big hits of loss and love this week.

Here’s this week’s links…

Kids – Why We Fight

Talia Joy Castellano

We can’t even tell you how heartbroken we were to hear of Talia’s death. Talia inspired millions with her infectious spirit and make up tutorials on YouTube. She never stopped fighting. Talia was known for saying that make-up was her wig. Her tutorials were not only a matter of self expression, but a way to deal with the toll cancer was taking on her body. She inspired people all over the world and has definitely left a lasting impression on many lives.

Amiya DeGroat

Amiya was fifteen months old when she was diagnosed with stage four neuroblastoma. Despite chemo, radiation and surgery, Amiya’s condition continued to worsen. She passed away July 14th. Amiya was a “warrior princess”, her mom says. She was always fighting, and always smiling. We’ve lost one more warrior…but we’re still fighting the battle for you, Amiya! Our prayers are with the DeGroat family.

Non-Profits / Events / News

Special Delivery

Hazel Hammersley, 2, was stuck in the hospital with a fever and wanted pizza – and boy did she get it!! A few days after placing the “SEND PIZZA” message in her hospital window, a Reddit user saw the display and snapped a picture. The pizzas started coming and didn’t stop until the hospital requested them to. Nice to see some positivity being spread!

Kids Helping Kids

Kidz Charity Productionz is a group committed to promoting young people helping other young people. Their eighth fundraiser, a carnival, was organized in part by a group of teenagers with a passion to help raise money for a local child with neuroblastoma.

Braden Prescott

All of this pizza talk is making us hungry! Franco’s, a is latest business to step up and back the Prescott family. They’re hosting live music and serving up a three-course meal on September 6th. The money raised will help with the cost of treatments Braden has racked up while fighting neuroblastoma.

Wiffle Tournament

Some run of the mill fundraiser wasn’t going to cut it for the Jacob Boudreau Memorial Fund. They organized a Wiffle Ball tournament to raise money for the Jacob M. Boudreau Memorial Scholarship. Jacob Boudreau died at the age of 12 after a seven-year battle with neuroblastoma.

Family Fun Night

Olivia Henson was diagnosed with neuroblastoma when she was a year old. Amazingly, she is now in remission, but that doesn’t stop her mother from raising much needed funds for the Neuroblastoma Society. Kimberley Henson put together a family fun night with crafts, a disco and an auction. Sounds like a lot of fun.

Research of New Therapeutic Approaches

A privately held biopharmaceutical company has announced an agreement with CHOP (Children’s Hospital of Philadelphia) to begin researching new therapeutic approaches for the treatment of NB. The study will explore immunotherapy and how targeting certain cells may provide a better treatment option for patients with high-risk diseases.

Talia’s Bucket List

As Talia’s health worsened, she complied a bucket List. -Send a message in a bottle. -Write a letter to your crush. She planned to check things off of her list as she fought neuroblastoma and leukemia. Sadly, five days after the list was compiled, Talia passed away. Her followers have taken to their social media outlets to share pictures and videos of Talia’s wishes being carried out. Amazing.

Jump For Life

Alexander Strong passed away in January from neuroblastoma. Although he is gone, his memory is still driving others to raise awareness for NB as well as funds for other children who are suffering. Jade and Lyndsey McConnachie, sisters, are a few of the people determined to make a difference. They’re organizing sponsored parachute jumps from a plane at Hibaldstow Airfield!

Cycling for Harry and Sam

Ottley Cycle Club member Ian Keller completed a ride from London to Edinburgh on Sunday, July 28th. He was inspired by family friends Harry Buckley and Sam Brown, who are both friends of Ian’s son. Both of the boys are terminally ill. Harry has Neuroblastoma and Sam has the genetic condition Morquio Syndrome. The funds raised by Keller from his ride will benefot the Neuroblastoma Society and the MPS Society.

It’s a Knockout at 360 Play

The 360 Play center is hosting a charity event to benefit The Henry Allen Appeal. Henry is three-years-old and fighting stage four neuroblastoma. The event will be family friendly and promises lots of fun!

All Clear for Anya

Two-year-old Anya’s parents are “over the moon” with the news that their daughter, who has been battling stage 4 NB since last October, now has clean bone marrow! With good news comes some bittersweet, though. Treatment is far from over. Anya still has to undergo a stem cell transplant and radiotherapy. They are trying to raise to money to get Anya to the United States to then receive immunotherapy, which could reduce her risk of relapsing.

Charity Ball

360 Play isn’t the only business backing little Henry Allen in his attempts to raise money for treatments. The Doubletree Hilton is hosting a charity ball for the tot on September 14th. Jewellery Divaz has also organized a family fun day on August 4 at Tattenhoe Pavillion.

Burgers for Bob

4-year-old Bob was taken to the hospital on June 29th after his parents noticed he as limping. He is nonverbal due to Autism, and couldn’t tell his parents what was wrong. Doctors found that he had stage 4 neuroblastoma. ‘Burgers for Bob’ is an event taking place to help the family with medical costs. There will be BBQ, music, raffles and a dessert auction.

Talia’s Dad Continues Her Fight

The death of his daughter Talia has served as a new kind of beginning for Marc Winthrop. He has founded Band of Parents, which is a volunteer based organization whose goal is to fund new therapies for Neuroblastoma. He says that he is dedicated to getting “world-class care for all children, regardless of their parents’ insurance statuses or income.” We are sure that he will achieve wonderful things, just like his daughter.

Progress in Childhood Cancer Study

Scientists from the University of Southampton are encouraged by the developments in their recent study. They have found that two antibodies, developed by the Hampshire team, actually boost the immune system to help it fight neuroblastoma. This could lead to promising new treatment options.

Golf & Gala Event

Scott and Brandi Phillips started the Pierce Phillips Charity after losing their son, Phillip, to neuroblastoma. The foundation has helped fund four phase-1 clinical trials throughout the country since its inception. Their next event will be a golf-and-gala event on September 20th at Hard Rock Hotel & Casino in Tulsa, OK. All of the proceeds raised from the charity go directly to cutting-edge research, implementing real therapies for the deadliest forms of childhood cancer.


We could tell you about the attempt to break the record for the UK’s longest conga line…but it’s much more fun to watch!! Click on the link to see how people came together to try and raise money and awareness for Stacey Mowle. Stacey is battling NB and her parents are doing what they can to get her to America for treatment.

Filling the Sky Pink

Amelia-May passed away in July after a 10-month battle with neuroblastoma. Now, a month later, the sky will be filled with pink balloons in her memory. The event will raise money for the Amelia-Mae Davis Neuroblastoma Foundation, which her parents started in her name. “The idea is to turn the sky pink for Amelia-Mae,” said Cathy, who organized the event, “and show that as a community we will not stop fighting this aggressive cancer in her name.”

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