This Week in Neuroblastoma – 8/20/12

A busy week this week!

Sorry we’re getting this out late – we’ve been crazy busy planning our big event for tomorrow. Our first annual Karaoke for Kids (Beverly Hills, 2012) will be held at the SLS Hotel in Beverly Hills, from 7-1oPM. Ticket sales are closed, but some may be available at the door.

We owe a gigantic thanks to our sponsors for this first Karaoke for Kids event – including United Talent Agency, HBO, CBS,, FX, Cookie Casa, Ziffren Brittenham, Lewis and Maura Kay, and many others. We’re so excited!

We also had a new project launch this week – #nomorenb. Project #nomorenb dedicated to telling the stories of kids with neuroblastoma, and raising funds to support research toward a cure. See more at

Here’s this week’s links!

Kids – Why We Fight

Lamont Harris

Lamont Harris is a 4 year old who’s stage 4 neuroblastoma is now in NED. The ASK Childhood Cancer Foundation, where he was treated, is featuring him as one of their Kourageous Kids this month!

Olivia Lambert

Australian 8 year old Olivia Lambert died this past week of neuroblastoma. Diagnosed in 2006, her parents will carry on her memory through the Olivia Lambert Foundation – raising funds toward curing this beast. Our hearts are broken this morning as we send our thoughts and prayers to yet another family who has lost a child.

Charlie Gibson Woolley

5 year old Charlie Gibson-Woolley has stage 4 neuroblastoma in St Annes. His mother is trying to raise £275,000 to send him to the States for treatment, as local options are unable to affect his cancer.

I Back Jack – Support from the Community

You may have heard of Jack Bartosz, of the I Back Jack foundation. If not – check out their site. He’s a cool kid with a ton of attitude who we’d love to hang out with. After battling neuroblastoma since 2005, there is no longer any treatment which can affect Jack’s cancer – and he is coming off treatment. Yet again – our thoughts and prayers are with a family in a spot none should ever be. Please pray for Jack.

Jamie Inglis Starts Treatment in Germany

We mentioned Jamie Inglis in an earlier TWiNB – the 7 year old’s family was trying to raise money to start treatment in Germany for him. They’ve now started!

Non-Profits / Events / News

Family Fun Day in Remembrance of Alfie Clark

18 month old Alfie Clark died last week after battling neuroblastoma since March of 2012. His aunt is planning a family fun day fundraiser in his honor for September 23rd in the UK. Funds raised will benefit the Neuroblastoma Alliance UK, a group dedicated to fighting nb in the UK. Our thoughts and prayers are with the Clark family.

3rd Annual Ethan’s Rodeo in Memory of Ethan Weiman

After battling neuroblastoma for 2 years, Ethan Weiman died in 2009 at 4 years old. The 3rd annual Ethan’s Rodeo was held this year in Mendon, IL to raise funds toward nb research. Check out more at

The Pain of Living without Charlotte

A great editorial was published this week on, talking about the pain of losing a child. Charlotte Rose Kelly’s mom is featured as she discusses the hurt 8 months after Charlotte has died.

Niamh’s Next Step Funds NB Conference in London

We mentioned Niamh Curry in previous TWiNB articles – he’d been fighting nb and his family was raising funds to bring him to a treatment center. Neuroblastoma is horrible – and Niamh passed before he could receive treatment. His parents are using some of the over £360,000 they raised to fund The Parent Education Neuroblastoma Conference, a conference in London where parents, non-profits, and researchers and physicians can come together to learn more about current nb research and how we can help.


MicroRNA-204 Increases Cisplatin Sensitivity

A recent study shows pairing cisplatin chemotherapy with MicroRNA-204 has a more favorable outcome than with cisplatin alone.

Research Database for NB Patients

Susan L. Cohn, MD, Professor of Pediatrics and Director of Clinical Research, Section of Pediatric Hematology/Oncology at the University of Chicago Medicine is working with the International Neuroblastoma Risk Group (INRG) to create on online publicly accessible database of certain neuroblastoma data.

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