This Week in Neuroblastoma – 4/22/13

This week we’re introducing you to some real life superheroes. (No really, they wear capes and everything!)

Here’s this week’s links…

Kids – Why We Fight

Ava Jorgensen

Last November, five-year-old Ava Jorgensen started preschool. The very next day, her life changed forever. Ava had been suffering from silent seizures, spacing out and biting. Her school noticed the odd behavior and notified her parents. An emergency ultrasound revealed a grapefruit sized mass in Ava’s stomach; she was diagnosed with stage 3 neuroblastoma. Ava’s family was not prepared for the diagnoses. After tons of tests, scans, surgery and 5 rounds of chemo, the Jorgensen family is hopeful that Ava will recover. She still has a lot more treatment and a long road ahead of her. Tonne, Ava’s mom, is a single mother of 5 children and Ava’s mounting medical bills are taking a toll on her. Family and friends are throwing a benefit to help with the costs on May 11 at 115 Bourbon Street, 3359 W. 115th St., Merrionette Park. We’re praying for you, Ava!

Non-Profits / Events / News

Soccer for Sam

Former Blackburn Rovers midfielder, Mark Patterson, has organized a charity football match for Sam Shaw. (We introduced you to Sam last month) The match will take place Monday, May 6th at the Anchor Ground at 10:30 am. Money raised will go towards the £250,000 needed for Sam’s immunotherapy, an essential part of his treatment for neuroblastoma.


TinySuperheroes may be the name of her organization, but there is nothing “tiny” about what Robyn Rosenberger does for children in need. After reading about Brenna, a young girl whose mother blogs about her severe skin disorder called Herlequin Ichtyosis, Robyn sent her a cape to help her fight her battles. It snowballed from there. Now, through her Facebook Page, Robyn urges people to sponsor little superheroes who don’t yet have capes. She also posts pictures of superheroes in their capes from across the world.

Fundraiser for Sam

Speaking of superheroes, Sam Shaw’s supporters are at it again! If Sam’s supporters keep up their awesome work, he will be in the US for immunotherapy in no time! Friday, a family friendly event was organized to help raise money for Sam’s treatment. There was a DJ, band, magician, raffles and lots of fun to be had. We can’t wait to hear how much money was raised!

COG 2013 Blueprint for Neuroblastoma Research

Want to know more about the heterogeneity of neuroblastoma? Want to learn what heterogeneity means? Take a look at this summary of the Children’s Oncology Group (COG) Neuroblastoma Committee’s article documenting the important current and future research being done to further understand NB.

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