This Week in Neuroblastoma – 06-05-14

What a positive and uplifting week! We have a couple promising treatments to share with you as well as many wonderful fundraisers taking place to either support current neuroblastoma fighters or in honor of those fighters who have passed. It’s always wonderful to hear stories of strangers being touched by the battle of a small child and their determination to raise awareness and funding for those children!

Here’s this week’s links…

Kids – Why We Fight

Cancer treatments force distance between mother and 2-year-old

2-year-old Zadee Lopez was diagnosed with stage IV neuroblastoma in April 2014. Shortly after the diagnosis, Zadee’s mother Ana found out that she was pregnant. Now, because of the cancer treatment, Ana is not able to kiss Zadee like a mother would nor is she allowed to change Zadee’s diapers or wipe away her tears. The effects of Zadee’s treatments could be fatal to her unborn little sister. This is unfortunately the ugly reality of childhood cancer. Please keep the Lopez family in your thoughts and

Anya’s ready to start ‘being a normal girl’

Three-year-old Anya Bentham is looking forward to going swimming for the first time in her life following an extensive battle with neuroblastoma. After 18 months of treatment, Anya was declared NED from her doctors. Fundraisers were created to help cover both medical and travel expenses and the Bentham family says that they will continue fundraising and if Anya is still in the clear after five years the money would either be used to treat another child with the condition or for neuroblastoma research trials. You can support Anya’s appeal by going to and donations can be made at

East Lancs cancer battler Sam Shaw fights on

Neuroblastoma fighter Sam Shaw, 5, has had his central line removed and has recovered from the procedure beautifully! According to his mother Christine, “He returned to school for the last couple of days of term before heading off for a much needed family holiday.” Have a great summer, Sam! Enjoy!

Non-Profits / Events / News

MUSC awarded childhood cancer research grant

Rally Foundation for Childhood Cancer Research (Rally), a national nonprofit organization is proud to award a $20,000 Rally for Research Grant to the Medical University of South Carolina (MUSC) to support Dr. Jacqueline Kraveka and her research on “Targeting Dihydroceramide Desaturase in Neuroblastoma.” The grant will be used to fund neuroblastoma research, more specifically, to develop and test inhibitors to the dihydroceramide desaturase enzyme in neuroblastoma. This grant is part of the $1.2 million Rally will be awarding to 34 hospitals across the country this year. To find out more about Rally, visit

‘Excellent’ survival in biology-based pediatric neuroblastoma treatment reduction

Tumor biology-based therapy offers excellent outcomes among children with intermediate risk (IR) neuroblastoma (NB), according to results from a prospective phase 3 reduction of therapy study from the Children’s Oncology Group, presented at the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting. As of now, there have been no deaths reported due to disease in patients with localized favorable biology tumors; however, there were a total of 20 deaths from all causes among patients with stage 4 neuroblastoma, but 3-year OS for patients with localized NB remained 100%. This is truly a promising therapy for neuroblastoma patients!

Bristol Children’s Hospital to trial cancer vaccine

Researchers at MSKCC in New York City alongside doctors at the Bristol Children’s Hospital are testing a new neuroblastoma vaccine which works with the patient’s own immune system to help it recognize and destroy the cancer cells. The trial has been funded by two charities, Neuroblastoma Children’s Cancer Alliance UK (NCCA UK) and Joining Against Cancer in Kids (Jack). We look forward to seeing the results of this vaccine in the near future!

GIVING BLOOD: Drive Honors Girl’s Memory

Many lined up to give blood in honor of a seven-year-old who lost her fight with cancer. Camryn Storbeck suddenly passed away in April after battling neuroblastoma. Her school, Crestview Elementary, organized a blood drive in her honor when she relapsed for the fourth time in March. Crestview Elementary School also dedicated a tree to Camryn. What a beautiful way to keep Camryn’s memory

Savile Town mum pledges to keep child’s memory alive

Yasmin Chhettri was only 3 years old when her 7 month battle with neuroblastoma came to an end. Her mother Liga has vowed that when the first anniversary of Yasmin’s death arrives in September, her grave will have a memorial stone in place. Liga says, “It has been really hard but a headstone is the only thing we can do for her.” Anyone willing and able to help Liga get a headstone for her daughter can email Liga personally at:

The Isabella Santos Foundation Announces Partnership with the Charlotte Hounds for ZERO K Run

The Isabella Santos Foundation frequently holds various events and fundraisers throughout the Charlotte, NC community and has now partnered with the Charlotte Hounds, a professional lacrosse team, for ZERO K Run. The ZERO K is an event where participants don’t have to run! Now that’s my kind of run!! Proceeds will benefit The Isabella Santos Foundation. Registration for the event costs $25. To learn more about the ZERO K Run and The Isabella Santos Foundation, please visit

Charity fun day for Summer

Summer Allen is a five-year-old girl who is battling neuroblastoma and a Fun Day Fundraiser is being held for her as her family is facing the limitations that the NHS have in treating this cancer in the UK. To learn more about Summer and the Summer Allen Appeal, please visit or you can donate by text by simply texting SUMM95 and your amount between £1-£10 to

Cancer girl, 3, pays own tribute

Sienna Riley, 3, has been battling neuroblastoma since she was 20 months old and paid her own tribute in memory of Stephen Sutton who recently passed away. Sienna posed for a picture posted online giving Stephen’s trademark thumbs up sign. Currently, the Riley family is raising funds to cover future medical costs and have since raised £17,000. To donate to Sienna’s medical expenses, please visit:

Coach’s request changes the way football players define family

Justin Thompson, first-year Skyline head coach hopes to bring out the best in his players and the sport they love by changing the way his players define family. A player for the team mentioned 4 year old Ava Manwaring to coach Thompson and told him that she was fighting neuroblastoma. The team then went to the Manwaring home to see if there was anything the football team could do to help the little girl and her family where they met and instantly fell in love with little Ava. Since meeting Ava, the Skyline Eagles football team decided to host a dinner at the school which was held on June 2 to benefit Ava and her family. Thank you, Skyline Eagles for your love and support!

Why I Relay

Kaylee Bickford has written a beautiful essay as to why she participates in Relay for Life. Kaylee states that her older brother, Austin, was diagnosed with stage IV neuroblastoma at the age of 5. Austin relapsed twice and amazingly is still alive today! Please take a moment to read this heartwarming essay of a sister’s love, admiration, and continual support for her older brother.

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