How We are Working to Cure Neuroblastoma

As a non-profit, we get a lot of questions. Everything from “why do you do what you do?” to “why should I give to you?” to “can neuroblastoma really even be cured?” We spend a lot of time sharing who, why, and what we are, and thought it’d be good to share some of the points which come up often. …

Hope – Mark Dungan, and Sydney

Hope is a huge part of fighting neuroblastoma. Mark Dungan shared the beautiful story of his daughter Sydney, who was diagnosed 10 years ago yesterday, and is now a brilliant, happy 12 year old young lady. Here’s her story… “On June 21, 2003, almost at this very moment, Sydney was diagnosed with NMYC amp. stage 4 NB. What followed that was …

my sons are not gone; they’re just dead

in our home there is a room which is for “storage” it used to have a crib on the door there are still hand-Crayoned signs “Ezra God loves you” missing the comma which always made us laugh penned from children in a school class who I hope will remember the day my son came to visit with a smile so …

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 …

2013 – a kiss from Ezra

For New Years Eve, Robyn and I went out with some close friends of ours to the Tampa Convention Center, where there would be a “ball drop”, fireworks, and some music. 2012 had been a hard year – walking the line between grief that burns so icily deep it pauses your very will to move forward, and the thaw of …

Making a difference – TODAY

In March you came to Cure Me I’m Irish. We sent the proceeds out to Dr. Sholler and the NMTRC consortium in Grand Rapids Michigan. In June they opened the trial in Michigan and since that time they have been opening the study at NMTRC sites all across the US. In the 4+ months since the study opened over 25 …

#dosomething

Next time you are out back playing with your kids or tailgating with your friends and get your hands on a football take a look at it.  Lay it on the ground next to a few tennis balls, a softball, an apple and about 25 grapes. Now? Imagine putting that many tumors – in those sizes –  inside the body …

It is all just so embarrassing..

Nearly 6 billion  dollars spent on the congressional and presidential elections for 2012. What will change?  No matter who won the embarrassing behavior from everyone involved will still continue. The polarization has only gotten worse and the complete lack of respect for any other human being ‘not on your side’ has somehow gotten more extreme. I heard a woman the other day …

Run to BEAT NB

Last year two Beat NB folks decided to turn their passion for running into an outlet for awareness, fun, friendship, health and raising funds. They formed the “Cure Me I’m Irish Running Club” and began recruiting new members and spreading the word about our mission: to save kids with cancer and BEAT NB. They ran the Falmouth Road Race in …