iSad, iMad, iPad

iMad

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 4, 2014. The next action needed is to have the bill appropriated.

Digital-Clock-Icon1It’s not much fun being old. It’s 2:42AM for Pete’s sake! I seem to get up a lot and vent about it on my iPad. My wife doesn’t appreciate venting to her in the middle of the night, so I choose to do it this way. It seems to help a lot with our relationship and that’s important.

I’m irritated about how I have to take meds for just about everything and sometimes nothing works. I’m really irritated about three of them tonight.  I’m on blood pressure pills like most old people, melatonin to help me sleep, and stool softener. None are working at the moment, so I am sure you can understand why I’m irritated.  Actually, lately it seems I easily get irritated about a lot of things. Irritated is not good for sure, but it’s a heck of a lot better than “mad.”

GabriellaMillerWhile I was laying in bed and unable to sleep, my mind seemed to keep bringing me back to thoughts of little Gabriella Miller and her parents. Most of you know her. She’s the little girl who recently had lots of news articles about all that she did in her fight against cancer. The first time I saw her was on TV when she spoke at the childhood cancer CureFest event on the mall in Washington, DC in September of this year.  This cute little pint sized, 10 year-old ball of energy stepped right up to the microphone and said, without any hesitation at all,  “Hello, I’m Grabriella Miller and I have brain cancer.” She had me at “Hello,” and I fell in love with her as she went on to tell her story and what she was doing and what she wanted others to do. Sadly, the walnut sized brain tumor that she symbolically smashed with her frying pan finally  got her.  This makes me so very, very sad.  This beautiful little girl, so full of life, taken from her mother, father, and little brother by a tumor the size of a walnut.  I am a grandfather of 4. She could have been one of mine.  I’m sad and I’m mad as hell when it comes to kid’s cancer.

My grandson is a survivor of neuroblastoma. The clock has been ticking for seven years now and so far, there are no signs of it returning.  After I retired, I chose to assist my daughter who has been involved in cancer research and the childhood cancer community for years.  We have been working to gain support for the Kids First Research Act long before it was named in honor of Gabriella. We felt that it was a good idea to repurpose the federal presidential election Passedfunds into much needed pediatric research.  By the way, childhood cancer research is a big part of the pediatric disease research universe.  It was a perfect match to have Gabriella Miller attached to this bill that not only benefits kids with cancer, but also benefits other kids with rare diseases. Gabriella was a champion of kids and a childhood cancer advocate at the same time. This bill was one small, painless way to move money to help kids without increasing spending. Do we need additional childhood cancer funding?  Yes, absolutely and lots of it.  We are working on that too.

This is what really makes me mad.  The bill just passed in the House one week ago and already there is talk of it not even making it to the Senate floor for a vote! Can you believe it? That’s ridiculous!  I can’t believe we could possibly let something like this go without FryPan13consideration of all our members of the Senate!

Over the coming weeks, we will join forces with others who feel as we do. We will form an action plan that will get this bill considered and passed by the Senate.  Get your frying pans ready! Before it’s over, we may ask you to bring them to Washington so we can crack some nuts up there.

Author: Joe Baber

Related Articles:

HR: 2019 The Gabriella Miller Kids First Research Act

Smashing Walnuts: A Call to Arms

Smashing Walnuts and Barriers

This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , . Bookmark the permalink.

One Response to iSad, iMad, iPad

  1. Laurie O says:

    Hi, I keep thinking about Gabriella’s words to “stop talking and start doing.” How ironically sad that the Senate has taken a “stop talking” approach in reference to a bill that would direct taxpayer funding of political convention fluff to pediatric research. I understand that there are junk bills unworthy of discussion, but who would possibly say that this is one of them? How much time do we have to get the Senate to act, does anyone know?

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