This Week in Neuroblastoma – 05-16-14

This week is packed with numerous promising trials that have shown extraordinary results. Such research and trials are desperately needed, especially for neuroblastoma patients like 2 year old Keagen Thill, 5 year old Molly McNally, 4 ½ year old Lulu Demetriou, and 6 year old Sammy Nahorny. We remain optimistic that a cure is in the future!

Here’s this week’s links…

Kids – Why We Fight

Keagen’s Fight Against Neuroblastoma

Keagen Thill, 2, was diagnosed with stage 4 Neuroblastoma on 6 June 2012. The tumor started in his left adreneal gland and spread to his right adrenal gland wrapping itself around and through his spine paralyzing his left leg. Keagen had scans this past week which dreadfully revealed that he has relapsed. Please keep Keagen and his family in your prayers as they prepare for PET scans and a biopsy. You can follow Keagen’s journey via Facebook at “Keagen’s Fight Against Neuroblastoma.”

Brave Molly battling the ‘bold boy in her tummy’, as she calls her cancer

Molly McNally, 5, is battling neuroblastoma, or the ‘bold boy in her tummy’ as she refers to it. “Neuroblastoma Stage 4 is unfortunately the worst type, the most aggressive and it is hard to treat. But Molly keeps us going and she is receiving the best treatment available from the doctors and staff at Crumlin and at Our Lady’s in Drogheda. However, we need to make contingency plans in case she needs to get treatments outside the HSE system,” said Emma, Molly’s mom. Molly has her own Facebook page “Molly McNally Miracle Trust” and her own webpage with further details about fundraising events can be found at

Lulu is mum’s little miracle

Lulu Demetriou, 4 ½, was diagnosed with neuroblastoma when she was only 8 months old. Lulu has endured 12 rounds of chemotherapy, 14 rounds of radiotherapy and a stem cell transplant. Unfortunately, doctors told Lulu that they have exhausted all proven treatment options and her parents live in hope that researchers somewhere in the world will develop a clinical drug trial that could improve her chances of survival. Please keep Lulu in your prayers.

He Fights Like a Superhero, but He’s Just a 6 Year Old Kid

He may not have superhero powers, but 6 year old neuroblastoma fighter Sammy Nahorny sure fights like a superhero. A tumor was found above Sammy’s left kidney which spread to lymph nodes and bone marrow. Sammy went through high dose radiation in Chicago, mostly alone as treatments made him radioactive, too dangerous to touch. A non-profit called Sammy’s Superheroes was set up to help fund Sammy’s treatments as well as other superheroes fighting neuroblastoma. To learn more about Sammy’s Superheroes, please visit

Non-Profits / Events / News

Cushendall cancer patient donates fund to charity

Nicola McCurry, 26, from Cushendall has been suffering from neuroblastoma since she was 6 years old. Nicola relapsed in 2009 and was told last summer that there were no further treatments available for her. Since that terminal diagnosis, Nicola decided to donate £40,000 raised for her to help others suffering from the same cancer. Nicola said, “On learning that I am not suitable for further treatment I wanted to tell all the people who have fundraised for me and kept me in their thoughts and prayers and that I am extremely touched and grateful for everything.” How incredibly generous is this beautiful young lady?!

R&D Alliance Formed To Develop Cancer Treatments For Children

Children cancer advocates and researchers in Australia and the U.S. have entered into a partnership, forming the Children’s Oncology Drug Alliance (CODA), a research and development alliance that will facilitate drug development for children with neuroblastoma. This new partnership will attempt to expedite development of an innovative new therapeutic approach to neuroblastoma. We are extremely excited about this new alliance and the potential for the development of a cure for neuroblastoma!

$2.437M Grant to Fund NY Genome Center Pediatric Cancer Research Effort

The New York Genome Center (NYGC) launched a multi-institutional research effort aimed at fighting pediatric leukemia and neuroblastoma funded by a two-year, $2.437 million grant from The Sohn Conference Foundation, both institutions said today. NYGC will also conduct genome sequencing and computational analysis for the research effort. These efforts will attempt to identify and analyze why some children’s tumors respond readily to treatment while others do not. The results of these studies will be able to more effectively and accurately treat leukemia and neuroblastoma treatments. Just one step closer to a cure!

Experimental antibody shows early promise for treatment of childhood tumor

St. Jude Children’s Hospital conducted clinical trials of the monoclonal antibody hu14.18K322A. The results were astonishing! Tumors shrank or disappeared and disease progression was temporarily halted in 15 children with advanced neuroblastoma. Because of these results, St Jude will be expanding their trials to include newly diagnosed patients. We are eager to continuing following this research as it has shown extremely positive results!

Promising High-Dose Radiation Therapy for Neuroblastoma Now Offered in Illinois

The University of Chicago Medicine Comer Children’s Hospital has become the first in Illinois to offer pioneering, targeted, high-dose, intravenous radiation therapy for relapsed neuroblastoma and other difficult-to-treat cancers. There are only about 12 hospitals nationwide that are equipped to administer metaiodobenzylguanidine or MIBG. MIBG is a molecule that is internalized by neuroblastoma cells. When combined with radioactive iodine and administered to patients intravenously, MIBG can target and kill tumor cells while sparing healthy tissue. MIGB does not cure neuroblastoma, however it is a promising next step in a complex treatment plan for high-risk patients. For more information on neuroblastoma care and research at Comer Children’s Hospital visit

Washington educators get all wet for fundraiser

Washington Jr. High teachers ‘Plunge for Eli’ and raised over $50,000 for Green Bay toddler, Eli Kupsky, who was diagnosed with neuroblastoma one month after he was born. In August of last year, Eli’s mother, Cammie, found a lump on the infant’s leg while changing his diaper — a lump that was later found to be one of 15 tumors on Eli’s body. After initial treatments failed to prohibit tumor growth, Eli was transferred to to a neuroblastoma specialty clinic in New York. Eli’s family remains optimistic that this treatment will be successful. For more information about Eli, or to make a donation, visit

Hair-raising idea to raise cash for cancer charity

A charity haircut event was held in memory of eight-year-old Jesson Wragg, who died from neuroblastoma in 2007. Funds raised from this event were donated to the Neuroblastoma Society. Jesson’s mother, Helen, who herself suffered from ovarian cancer and underwent a hysterectomy, said, “Apart from the fund-raising aspect, we also want to raise people’s awareness of what neuroblastoma is and how it affects everyone involved with the children who suffer from it.” We hope the event was a great success!

Manziel invites 6-year-old fan to NFL Draft

Charlie Dina, 6, was diagnosed with neuroblastoma in 2012. Shortly after diagnosis, Johnny Football learned of Charlie’s fight with cancer and started to wear a yellow wristband with the words “Charlie’s Angels” on it. For the past year and half, the two have been inseparable. Charlie goes to games and the friendship has helped the Dina family turn Charlie’s Angels into an official charity. This week, Charlie and his parents are in New York City as guests of Johnny to attend the NFL Draft. To learn more about Charlie, please visit his Facebook page at “Charlie’s Angels 413.”

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