This Week in Neuroblastoma – 05-22-14

”If we don’t stand up for children, then we don’t stand for much” ~ Marian Wright Edelman

Here’s this week’s links…

Kids – Why We Fight

Raising Hope for Raygan

Six rounds of chemotherapy, a stem cell harvest, a bone marrow transplant and 20 days of radiation all endured in the first two years of Raygan’s life after being diagnosed with neuroblastoma. Raygan may need to travel for more treatment which will require extra funding which is why Raygan’s family will be holding a fundraiser on July 20. In addition to raising money for Raygan’s medical bills, money will go toward the Children’s Hospital at UVa. To help with the event or get more information, people can email

Merryn’s the one that drags us all out of bed in the morning’ – Dad

Friends, family, and completely strangers have poured out their hearts to support Merryn who is battling Stage IV neuroblastoma. “People have been so kind and brilliant,” says Merryn’s father Michael. “All over. In Derry and down here and all over Ireland and in the UK. It’s been a great help.” There are several fundraising events planned over the coming months. For example, on June 2nd nearly 300 women plan to donate their proceeds from the 10K women’s mini-marathon in Dublin to the Merryn Fund. Then on June 14 and 15, volunteers will be taking part in the Hell and Back endurance event in Bray, for Merryn. To get involved in fundraising for the Merryn Lacy fund visit the fund’s website, and its Facebook page,

Wee Oscar’s legacy raises over £600,000 for charity

Brave five-year-old Oscar passed away on May 8 after battling childhood cancer neuroblastoma for two-and-a-half-years. Since his death, donations have continued to pour in on the Justgiving pages set up to support the youngster’s fight against the aggressive disease and has raised well over £600,000. The money raised not only went to Oscar Knox Neuroblastoma Children’s Cancer Alliance (NCCA), but also went to Northern Ireland Children’s Hospice and the Haematology Unit at The Royal Belfast Hospital for Sick Children. Keep up the good fight!

Boy who survived neuroblastoma now skiing in major competitions

Kieran Troup, 14, was diagnosed with neuroblastoma when he was just 10 months old, and spent most of the first two years of his life in hospital. Today, Kieran is now skiing competitively for Scotland! How cool is that?!

Non-Profits / Events / News

Run 2 Cure Neuroblastoma

Little Evie was diagnosed with neuroblastoma in 2013 when she was just 2 years old. Recently, Evie received some great news- she is NED! Evie is now entering in the final round of treatment known as immunotherapy. The Run 2 Cure Neuroblastoma Fun Run will be held on June 22, 2014, in Australia and will benefit children like Evie who are battling neuroblastoma. You can learn more about Evie by reading her Facebook page “Pray for Evie.”

Local four-year-old’s fight against cancer

Desirae Cechin, 4, was diagnosed with neuroblastoma on April 16, 2014. This diagnosis completely blindsided and devastated Desirae’s family. However, Desirae and her family are determined to fight. This is just the beginning of a very long and very trying time for Desirae. Please keep her in your thoughts and prayers. For more information on how you can help Desi in her fight against cancer, visit her event page on Facebook “Believing for Desi”.

Marcus Hook Elementary students set to host Alex’s Lemonade Stand

Fourth graders at Marcus Hook Elementary hosted their annual Alex’s Lemonade Stand fundraising event to learn more about Alex Scott’s heartbreaking battle with neuroblastoma that she lost at age 8. All donations will be sent directly to Alex’s Lemonade Stand. Online donations are also welcome on the Marcus Hook Elementary donation page:

Parent makes G.I. Joe tribute — with ’80s voice actors

In 2009 Armand was diagnosed with stage-4 neuroblastoma cancer when he was just 2 years old. Not long thereafter, his younger sister Autumn-Rose Pogue was born with a serious vision impairment. Their father Paul decided to create a G.I. Joe-themed tribute to them using voice actors from the original ’80s cartoon to do the narration. Be sure to check out the awesome video!

Experimental Antibody Shows Potential Fighting Childhood Neuroblastoma

Researchers from the St. Jude Children’s Research Hospital reported that its investigational monoclonal antibody hu14.18K322A shrank tumors and halted disease progression in 15 children with advanced neuroblastoma enrolled in a safety study. Trial participants received one of nine different doses of the antibody and received an infusion of hu14.18K322A once daily for four days. Of the 31 who underwent two or more treatment rounds, nine patients saw the disease stabilize, two patients saw a reduction in tumor size, and four patients did not report any tumors. This is fantastic news and we look forward to hear more about the outcomes of these young patients!

TET1-Mediated Hydroxymethylation Facilitates Hypoxic Gene Induction in Neuroblastoma

Here’s an article for all of you in the medical field or understand medical terminology. This article discuss how cells respond to hypoxia by inducing a transcriptional program regulated in part by oxygen-dependent dioxygenases that require Fe(II) and α-ketoglutarate. The research outlined in this article establishes that the TET1-mediated 5-hmC changes as an important epigenetic component of the hypoxic

Lifetime Achievement Award Honors CHOP Expert Garrett Brodeur for Career Work in Neuroblastoma

The Advances in Neuroblastoma Research Association (ANRA) is awarding its highest honor on pediatric oncologist Garrett M. Brodeur, M.D., of the Cancer Center at The Children’s Hospital of Philadelphia (CHOP). Brodeur will receive the ANRA Lifetime Achievement Award at the association’s international meeting in Cologne, Germany. The Award singles out a researcher who has achieved worldwide scientific prominence in investigating neuroblastoma over the course of a career. Congratulations Dr. Brodeur!

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