This Week in Neuroblastoma – 5/14/13

We missed you last week, so we’re doubling up on articles to make up for it.

We are crushed to say good-bye to Oliver Zane Emerson this week.

Others are raising money to continue their fights. A few football stars are also doing some great things to help spread awareness.

Here’s this week’s links…

Kids – Why We Fight

Charlie Dina

Charlie is a normal 4 year old in most ways. He loves Legos, Star Wars, super heroes and the Texas Aggies. But unlike most four year olds, Charlie is battling neuroblastoma. He has undergone surgery to remove one of his kidneys, experienced cardiac arrest while receiving chemo and endured a stem cell transplant. Charlie’s family has created Charlie’s Angels, a network of support for the entire Dina family. They’ve gained the attention of several celebrities, including local celeb Johnny Football (Johnny Manziel) from Texas A&M, who now proudly sports a Charlie’s Angels wristband. Charlie is now undergoing scans to see how his cancer is responding to treatment. blog.parkersu.com.

Joseph Charles

Five-year-old Joseph Charles has spent over 120 days of his life in the hospital since his neuroblastoma diagnosis 3 years ago. Called Joe Joe by family, Joseph shocked the Make-A-Wish coordinator with his unusual wish; he wanted to be a farmer. Joe Joe’s wish was made a reality when it was arranged for him to spend a day gathering eggs, holding piglets and fishing. cattlenetwork.com.

Oliver Zane Emerson

With heavy hearts we say good-bye to Oliver Zane Emerson. Oliver passed away at age 6 in his home on Tuesday, May 7th. Oliver fought neuroblastoma for almost three years. He loved Legos and sword fighting, and his deep faith in God inspired many during his battle. m.hollandsentinel.com.

Non-Profits / Events / News

Allie & Friends Golf Classic

Monday, May 6th, former Indianpolis Colt Ryan Diem hosted a charity golf tournament for Allie & Friends. Allie & Friends is named after Allie Neff, who sadly passed away from neuroblastoma. Joining Ryan at the golf outing were former Chicago Bears Dan Hampton and Glen Kozlowski. nwherald.com.

Fundraiser for Fraja Simpson

Family friends are working hard to organize a fundraiser for five-year-old Fraja Simpson, who has been diagnosed with neuroblastoma with MYCN amplification. Because the treatment she may need is not available in the UK, her parents have launched an appeal to raise the £500,000 needed to bring her to America for treatment. Read on to see how you may be able to help if you’re in the area! thisissouthwales.co.uk.

Mayor of Bedale honors Fraja

Remember Fraja Simpson? (Come on, it was just one link ago!) Mayor Amanda Coates of Bedale invited Fraja to be an honored guest at a recent charity fair organized by Emergency Animal Rescue Support. The organizers of the fair have made a donation to the appeal started to bring Fraja to the states for treatment. thenorthernecho.co.uk.

Genie Grants Liam’s Wish

After losing his father to cancer, Joshua Dawson set out on a mission to bring joy to those diagnosed with the disease. He dresses up like a genie and grants their wishes, how cool is that? Last week he made Liam Myrick’s wish come true. He accompanied four-year-old Liam and his family to the St. Louis Zoo and took him on a helicopter ride. fox2now.com.

Turn Skem Pink for Millie-Moo Walk

Millie Heaton is only 22 months old and is undergoing intensive chemotherapy after being diagnosed with neurbolastoma earlier this year. Her parents hope that Millie will be able to have immunotherapy treatment in America and are working hard to try and raise the money to get her to the US. They put a small dent in the amount needed recently, raising £1,077 through a charity walk. Their next event will be a Fun Day at the Derby Arms organized by Milly’s 14-year-old cousin. osadvertiser.co.uk.

Launch of the Global Neuroblastoma Network (GNN) Website

The Global Neuroblastoma Network (GNN) has officially launched its website! The GNN is an initiative that includes several institutions and professionals who are striving to improve treatment for children with neurbolastoma and establish a global network for neuroblastoma research and care. The website will promote interaction among professionals through knowledge-sharing group pages. Check it out! cure2children.org.


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