We had a good week this week – we headed up to New Orleans to meet 1 year old neuroblastoma-diagnosed Grayson Hernandez and his family (you may remember them as the family who was surprised by a flash mob of 700 kids singing a Bruno Mars tune to them). We’re beginning a new campaign to raise awareness of nb and start sharing our kids’ stories more, and we began with Grayson. More on that later.
It was great to meet yet another nb family, although we always hate that it’s cancer that brings us together. Tara and Gareth, Grayson’s folks, were the picture of southern hospitality. Fun-loving folks who have taken their smiles and strength into treatment, they hung out with us an entire afternoon in Old Mandeville, LA – across the longest bridge over water in the world from New Orleans. They even offered us their lake-front house to stay in for the weekend.
It’s incredible to see the strength cancer pulls from you. Tara said something we have thought before as well – people marvel at “how strong you are” going through treatment, and how they don’t know if they could do it. The truth is, this strength is in everyone, and when it comes time to go through this, you just buck up and do it. It’s a terrible strength, but it gets you through.
Grayson is a cute little kid who turned 1 year old yesterday. Follow their progress at caringbridge.org/visit/graysonhernandez.
Here’s this week’s links.
Kids – Why We Fight
Lilly Mae Morrison was diagnosed with stage 4 nb this past week. Based in Ireland, the family is beginning treatment now. A street performer (mentioned later in this week’s links) raised almost $10k for her already. TopNews
Diagnosed with stage IV nb, Logan North has been getting treated in the UK. Once his treatment is complete there, the family is hoping to come to the Children’s Hospital in Philadelphia for immunotherapy treatment – a £250,000 need. TopNews
Non-Profits / Events / News
A street performer (“busker”) in Ireland raised almost $10,000 during the Volvo Ocean Race, which he gave to stage 4 neuroblastoma diagnosed 4 year old Lilly-Mae Morrison’s family. Irish Times
Sharon Hopkins, whose nephew beat nb, continues to run races to raise money for neuroblastoma research. Last year she and 7 other women raised over $50k, and this year are at it again! Thanks, ladies – it’s appreciated. PAnow.com
Researchers have found some promising results with DNA profiling showing BIRC6 may have a potential therapeutic role in neuroblastoma. 7th Space
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