This Week in Neuroblastoma – 6/11/12

Hey there neuroblastoma fighters. 🙂

This week is actually International Neuroblastoma Awareness Week – bet you didn’t know that! So share this article, let folks know what’s up, and spread the word about neuroblastoma. We’re going to kick some nb tail.

Here’s this week’s links…

Kids – Why We Fight

Olivia Downie Needs to Get to Mexico

Olivia Downie is 7. She’s been treated in Germany and was pronounced no evidence of disease (NED is the best an nb kid can hope for so far – there is no remission status yet) – but she’s relapsed. They are trying to raise £25,000 to get her to a treatment center in Baja, Mexico which has a unique treatment called SonoPhoto Dynamic Therapy. The Scottish Sun

Kevin Cordasco, Jr – Battling nb

The son of a pro soccer player, 9 year old Kevin Corasco, Jr has been battling nb through multiple surgeries, chemotherapy, a stem cell transplant and radiation treatments. He’s relapsed several times, and is fighting now on experimental drugs and trials. Their family is strong, and continue to hope and love on each other.

Hey Bieber – Lilly DeJesus Wants to Hang Out!

Anybody know Justin Bieber? Lilly DeJesus, a 6 year old from Naples, FL who has been diagnosed with stage 4 neuroblastoma, wants to meet him. Drs say her cancer is spreading and they are unable to treat her further – her parents have created a Facebook page to try and get Justin to come meet Lilly. Our prayers and thoughts are with the DeJesus family.

£500k Needed for Jaiden Worrall

Only 100 kids a year in the UK get nb. The treatments available in the UK are primarily standard treatments, and when a child relapses there is not much to do but come to the US and get on some of the trials here – many of which are showing a lot of promise. 21 month old Jaiden Worrall’s parents are trying to do just that – raise £500k to get him to the states.

Charlie Needs £275k to Come to the US

Another UK nb kid, named Charlie, has stage 4 neuroblastoma and needs to come to the US for trial treatment – which could double his chances for survival. Part of the mission behind Because of Ezra is to raise money to see these trials brought into standard practice so more countries can benefit from them – it isn’t fair kids should ever be put in Charlie’s position.

Non-Profits / Events

Kelsey Charity Run in Bridgewater, NJ (June 17)

In honor of 20 year old Kelsey Kirchner, who survived stage 4 nb at age 2, the Kelsey Charity Run will be raising money to support nb research. They’re even giving away a Harley! If you’re in the NJ area, sign up and head out there! Bridgewater Patch

Over 200 Kids Bike to Beat NB

Third grader Nicole Levine has olfactory neuroblastoma. Over 200 kids showed up at a bike-a-thon, raising over $13,000 to support nb research this past week! Westborough Patch


New Trial Shows Hope with 131I-MIBG

A trial coordinated through and sponsored by the Children’s Oncology Group (COG) is testing the use of MIBG as a first-response treatment for nb kids. MIBG has previously shown good results in relapsed kids, and the hope is this front-line treatment will show even better results.

Perifosine to Treat nb?

Brian H. Kushner, an MD at Memorial Sloan-Kettering Cancer Center in New York is delivering a presentation on Phase 1 results for perifosine in neuroblastoma at the Advances in Neuroblastoma Research Conference. The event will be held June 18-21, 2012, at the Fairmount Royal York Hotel in Toronto. Market Watch

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