This Week in Neuroblastoma – 9/4/12

Ezra’s birthday was last week (Aug 31) – he’d have been 4 years old. We miss him. This week we are also furiously saying goodbye to 2 more kids.

Some good research is happening as well. Here’s this week’s links…

Kids – Why We Fight

Jack Bartosz

Crushingly, last week Jack Bartosz died from his stage 4 neuroblastoma. He had been fighting it since 2005, and was 10 years old when he passed. Jack was an amazing kid with an attitude of AWESOME who we never had the chance to meet. We followed their story via their foundation I Back Jack. Our love to the Bartosz family.

Mitchell Huth

Mitchell Huth was 7 years old when he died August 25th of this year. He’d been battling stage 4 neuroblastoma since September of 2010. It’s a weary feeling to offer our love, prayers, and thoughts to the Huth family – we will fight on in fury in his name as well, now. To the Huths – all our love.

Non-Profits / Events / News

Friends for Matty Turns Lost Pounds to Raised Dollars

Friends for Matty, a Lexington-based non-profit helping out families with neuroblastoma patients, has teamed up with a local gym (Fitness Together Lexington) to raise funds. For every pound lost by Fitness Together Lexington members in September, they’ll donate $5 to Friends for Matty!

Money Stolen (and Returned) from Charity Event for Oscar Knox

Unidentified thieves stole £1,000 from a charity event for 3 year old Oscar Knox. 3 days later, the money was left on a church doorstep. No one knows who the culprits were – but it’s nice to know they had a change of heart.

Friends Raise Over £8,000 for Jamie Inglis

8 year old Ben Donohue swam over 5 and a half miles while his father’s friend ran a marathon on a treadmill this past week, to raise over £8,000 for their friend Jamie Inglis. We’ve mentioned Jamie before – he’s battling stage 4 nb. Money raised will assist in his treatment costs.


Neuroblastoma in Older Patients

Neuroblastoma is extremely rare in seniors – only 8 cases have been reported with patients over 60. Italian doctors Micaela Pellegrino, Laura Gianotti, Sara Cassibba, Rodolfo Brizio, Alberto Terzi, and Giorgio Borretta have a paper released regarding their recent case of a 79 year old woman with nb.

Gene Score IDs Prognosis in Metastatic Neuroblastoma

Increased expression of tumor-associated inflammatory genes seems to correlate with poor prognosis, according to a study published online Aug. 27 in the Journal of Clinical Oncology.

$2m Awarded to Connecticut Children’s Medical Center from NIH Grant

Connecticut Children’s Medical Center has won a $2 million grant from the National Institute of Health for a 5 year study titled “Sphingosine-1- Phosphate Pathway Based Therapy for Neuroblastoma.”

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