This Week in Neuroblastoma – 6/17/13

Massive amounts of news this week! We have advancement in treatments, awards for research and some really cool kids for you to meet.

Here’s this week’s links…

Kids – Why We Fight

Henry Hallam

Henry is proving to be quite the little fighter. The three-year-old, who is receiving treatment for NB, came back from a terrifying turn last week. He is receiving immunotherapy threatment and the medications are making him violently ill; he continues to battle high fevers, a bloated stomach and low oxygen levels. His parents are struggling seeing him go through so much pain. His mother, Elsbeth, says “Henry is fed up and so upset but he’s a true little fighter and he’s battling on.” The community is fighting for Henry, too. £100,000 has been raised to help pay for his treatments in just three months!

Gage Staley

We think that all kids battling cancer are superheroes, so it’s pretty fitting that Gage’s Guardians are embracing that idea and calling everyone to pull out their capes and spandex! Gage Staley is seven years old and suffering from neuroblastoma. His friends and family have formed Gage’s Guardians, a superhero-themed group dedicated to supporting Gage in his journey and making sure he has a lot of fun! Their next event, which is a superhero pizza party, takes place this Sunday. Everyone is encouraged to wear their best superhero get ups and come out for some fun!

Alexa Dacres

Alexa Dacres is a special little girl. The nine-year-old proudly shows off pictures of her tumor, which she says looks like a piece of meat, along with her photos of pets and family. Alexa was diagnosed with neuroblastoma shortly after her 9th birthday. Her first words after diagnoses were “But I just turned nine!” Her main concern was that she wasn’t going to get to help her little brother on the bus to school. Her mission now? Kick cancer’s butt!! She is hosting Alexa’s Boogie-Woogie For a Cure this Saturday to raise money for The James Fund, an NB research center based out of The Hospital for Sick Children. The title of the event is as cute as Alexa is, but she’s serious about her cause.


This March, Angelina’s parents were given the devastating news that their 3-year-old had stage 4 neuroblastoma. Angelina’s cancer had spread to multiple areas of her body and metastasized in her bones. She has started a chemo regimen that will last for a year and includes a stem cell transplant. The Edelman/Phillips family has also just become aware that their home has many issues that may pose a threat to Angelina’s compromised immune system if left unresolved. They are asking for donations through the HK Project to help with the expenses of Angelina’s care and their home maintenance issues.

Non-Profits / Events / News

Solving Kids’ Cancer

Nonprofit organization, Solving Kids’ Cancer, is living up to their name. They just donated $153,000 to a phase 1 clinical trial at Baylor College of Medicine and Texas Children’s Cancer Center in Houston, Tx. The trial uses an immunotherapy approach to treating neuroblastoma and will start this summer.

Tour de Rock

Misty Dmytar is training hard for the 2013 Tour de Rock. She’s beasting her way through two training sessions a week, riding up and down hill and building her strength and endurance. And she’s doing it all to raise money for the B.C. Children’s Hospital. The hospital is special to Misty, since that is where her two-year-old son, Griffyn was diagnosed and treated for neuroblastoma. Griffyn was only four days old when he was diagnosed with NB, and after beating it TWICE, he is now in remission. Misty hopes that the funds she will raise by completing the Tour de Rock will help give other children a fighting chance to beat cancer. Rock on, Misty!

Dr. Morgenstern Wins Award for NB Research

Canadian doctor Daniel Morgenstern has been awarded the Brigid Leventhal Special Merit Award by the American Society of Clinical Oncology. Dr. Morgenstern researches potential new drugs for neuroblastoma. The study that won him this award suggests that the way NB spreads throughout a patient’s body also affects their response to treatment and the possibility of survival. Keep up the great work, Dr. M!

Parker Palooza

Parker Palooza took place over the weekend in San Diego, CA. The event, which had musical entertainment, big displays of motorcycles, several celebrity appearances and food trucks, benefited 6 year-old Parker Shaw. Parker was diagnosed with stage 4 neuroblatoma recently. The event was organized to raise enough money to get Parker the best treatment available.

Advancement in Anticancer Drugs

For the past few years, clinicians have been researching HDAC inhibitors and their effects on certain cancers. These HDAC inhibitors have proved to be effective in preclinical trials against neuroblastoma. Scientists from the German Cancer Research Center and Heidelberg University Hospital now believe that the drugs can slow down tumor cell growth. We love hearing how hard everyone is working to kick cancer’s butt! (Read all the medical jargon here!)

Marathoners Back Corey’s Fund

Corey’s Fund was started by Corey Nickell’s parents after he lost his 2 year battle with neuroblastoma at the age of four. Fueled by the anguish of losing their son, Jim Nickell says they started the scholarship “in remembrance of his wonderful character and courageous fight against neuroblastoma”. Corey’s Fund recently received a $1,100 check from the Miami Athletic club after a new group of marathon runners completed the “Flying Pig Triple Crown”, which included a 5k, 10k and half marathon. The Miami Athlhetic Club has supported Corey’s Fund for the past 4 years and plans to continue to do so.

‘Special Space’ for Matthew

Matthew Pedrotty is five-years-old and battling stage four, high risk neuroblastoma. He is currently spending a majority of his time in New York at Sloan Kettering, where he is a study patient. When he is able to return home to Albuquerque, he will find a big surprise! With the help of a group called Special Spaces, artist Rick Martinez painted an incredible mural in Matthew’s back yard. It depicts Matthew and the Incredible Hulk slaying a dragon. The dragon represents cancer. Very cool!

Proton Beam Therapy Explored

An ongoing clinical trial has share their results of proton beam therapy for advanced neuroblastoma. The Trial took place from 1984 to 2010 and included 14 patients. They have found that proton beam therapy may be a better alternative to photon radiotherapy for patients with advanced NB that was hard to treat with photon radiotherapy.

Spirit of NI award for Wee Oscar

Wee Oscar Knox, who was declared NED not too long ago, was the center of attention at a ceremony for special people and unsung heroes. Oscar was diagnosed with NB at three-years-old but fought hard to beat the cancer. He was backed by the Belfast community, who raised a large amount of money to help with his treatments. Oscar was excited about his award saying, “I got a big star cos I won the game!”

Teens Travel to Donate Platelets

A group of teens and teachers from Nauset Regional High School have been making the 1 hour trip to a blood donation center to donate platelets. To travel, go through the donation process and get back home, the groups have to commit to spending half of their day to donating. The kids make the best of the situation, traveling with friends and feeling good about the deed they are doing. Kevin Fitzgerald, a junior at Nauset, is particularly moved by his peers’ actions. Kevin was diagnosed with leukemia in 2011 and received a bone marrow transplant as part of his treatment. Because of complications with the transplant, he then had to have a double lung transplant. He has had to receive about 50 platelet transfusions, and calls his fellow Nauset students efforts “life-saving.” Kevin’s cancer is now in remission.

Search Engine Helps Raise Awareness, a leading search engine optimization company, is partnering with the Isabella Santos Foundation to help support their efforts in raising awareness and funds for neuroblastoma. is helping the ISF to be found easier on the internet by those interested in supporting or donating to their cause. The ISF was formed after Isabella lost her battle with neuroblastoma in 2012. They have raised almost $400,000 in the past two years to support NB research.

Happy Birthday Gabe!

Gabriel Rooker is celebrating his fourth birthday on June 30th, but because of his neuroblastoma, his immune system is too weak for a party. Gabe was diagnosed with NB shortly after his third birthday. This year his parents wanted to make sure he was able to celebrate, but knew the traditional way was out of the question. They decided to throw him a “card party”, asking people all over the world to send Gabe a birthday card. So far, he has received more than 2,000!!

If you would like to send Gabe a card, send it to: Gabe Rooker, P.O. Box 403, Amherst, OH 44001. Happy birthday, Gabe!!

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