Blogging for a cause – Fight SMA
Instead of blogging tips and twitter tips, I will be blogging about something much more important. Today I am blogging for a cause, and the cause is SMA (Spinal Muscular Atrophy) which is a serious neuromuscular disease. Like most people, I never heard of this disease until it affected a very close lifelong friend of my wife.
Here’s her story :
Sweet Baby Zane from Clair Pruett on Vimeo.
Many people were moved by the story including Christoper Finlan. Christopher has written a novel (his first) which sheds some light on this terrible an under reported disease. I asked Christopher to write a post for me to publish and talk about how this book came to be. Here are his words…
First off, I’d suggest you read about Zane, Hillary, Keith and Avery in Hillary’s foreword, since that’s the biggest reason any of this happened. Spinal Muscular Atrophy is an incredibly underreported condition that children suffer with, and should be given the attention it deserves by the mainstream media. Their story is one that everyone should read, regardless of what you think of the rest of the book.
I do want people to understand going in, the story itself is fiction. It’s a mystery and a love story and a comedy, and just “happens” to have SMA as part of the plot. It’s meant to be a fun read and something anyone can enjoy, so people who happen upon it for any other reason get to learn a little more about this terrible disease without even realizing it. So how did this book come about?
In late May/early June, I was diagnosed with ADD. In fact, the doctor’s exact words were, “You have one of the worst cases of ADD I’ve ever seen. I’m surprised you’re not living under a bridge or something.” Little did he know my wife and I had made an offer on a place under a bridge, but whatever. So when I was I diagnosed with that, I was prescribed medication for it. It was like I was a whole new person. No, I didn’t get hair or chiseled abs, but the change was dramatic. My wife was stunned at the difference, and still is. A book I read described it as getting “glasses” for your brain, or like stumbling around in a semi-lit room your whole life and then someone clicks the light on for you.
Once that happened, a few other things came together. I’d already had this idea for the book, and to be honest, the disease wasn’t SMA when I first had the idea (since I’d never heard of it until Zane). However, as mentioned on the website, once Zane died, I was discussing her death with some friends, and we ended up discussing the book idea I had in the context of just being a parent and what you go through. Well, since the reaction to the idea in the prologue was so positive, I started on it the next day.
The first person I actually told when I got started was Heather. I’d never done this before, and I didn’t want it to be a trainwreck. In fact, if at any point she’d told me “This is a trainwreck.”, I would have stopped and not published it. It wouldn’t make sense to try and raise money for SMA with a bad book, since no one’s buying a bad book once my mom stops buying copies. Anyway, Heather would send me e-mails of encouragement each day so I’d keep at it, and since I thought it was going well, I told Hillary about it. My intention was not to tell Hillary about it until I was done, and then let her know, but having ADD, you’re impatient, and I told her about two weeks or so into it.
I went back and found the original e-mail I wrote to Hillary, in which I wrote the following – “If you are interested and only if you are interested, I would be honored if you would allow me to have a small dedication to Zane either you write or I do before the story begins, or if you’d like to write a preface to be included. I would not only be happy to include it, but truly privileged to do so. Now, you may not want Zane’s name anywhere near this after you read it, and that’s entirely up to you.”
Hillary was very gracious and very excited (and apparently still was after she read it), so I sent her and Heather the manuscript when I finished it in late July. The other person I sent the manuscript to was Sarah McMaster. Why Sarah? Well, when you write a book, or at least when I did, you “cast” people in the various parts. All along, the person I cast as “Sarah Knox” was Sarah McMaster. Who did I cast as Jim in my head? I’m not telling for now, but perhaps the fact a Sarah in the book is being played by a Sarah would give you a hint, and hopefully not scare you off at the frightening lack of creativity I showed in handing out names. Regardless, I wanted to have her involved somehow and possibly do the audio version, since I thought it was important to have that as an option for people to buy to raise more money. She was very gracious and agreed to help out however she could.
Now while Hillary’s foreword is much the same as what she first wrote, that can’t be said about the rest of the book, as it’s undergone six full reviews with the editor, and I’d guess around fifteen to twenty percent of what you’re reading is from that first draft. The characters are still there, and certain scenes are from that first draft, but the vast majority of this came after what they all read. That being said, Heather was so positive about the first draft for someone who hadn’t done this before, suddenly it didn’t seem crazy that this could really make a difference, and that’s what all of us are so grateful to you for.
I’m happy to announce we’ve already raised over $1000 for FSMA just in donations from pre-orders, and that’s for a book from an author who no one had ever heard of on Monday. Thank you so much, and keep doing what you’re doing. You’ve made a difference already, and I thank you, Hillary thanks you, the entire team thanks you.
Thanks Tycoon!
Christopher Finlan
Thank you Christopher, I am happy that I can help spread the word. Please visit Christophers’ website , Not a Fire Exit to learn more about the book and SMA. A portion of the proceeds will be going directly to help fight SMA. You can also help the cause by joining the Facebook fan page, click here to join. We are looking for 200 more fans before the end of today.
Please also consider sending out a tweet to your followers for this good cause.
9 Responses to “Blogging for a cause – Fight SMA”
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Thank you for blogging for SMA! I’m the mom to a 2.5 year old Type I daughter with SMA. She was given weeks or months at the age of one month. We are blessed to still have her in our lives. While it’s not easy, we are blessed.
Thank you so much,
Sarah Turnbull
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Thanks for this nice post. Its very nice idea for blogging. I will also going to make a post on this topic.
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This is a really good cause and i think i will support by joining the fan page. It is a very difficult task to write, but i Think Christopher has done a good job for this cause.
@virtuosoblogger
gautam hans´s last blog ..How to Make your Contest a Success!
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Good luck in your cause. Glad you already raised some serious money for the cause. I just became a Facebook fan.
MichaelR´s last blog ..Cut Your Toll-Free Service Expenses
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There really isn’t any ’special’ blogging site that is just going to provide readers or subscribers. I’ve had wonderful luck with both blogger and word press. But I have also taken the time to promote every single blog I have created…
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how can we help??
A.Razvan´s last blog ..Jocuri Gatit
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recently i started off page seo process like blog commenting,article submission.forum posting.really blog commenting is very useful for indexing.i got good points here thanks for sharing.
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One of the more outstanding ideas someone has come up with – really in my eyes.thanks for this post.
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Doing some browsing and noticed your website appears a bit confusedin my K-meleon internet browser. But fortunately hardly anyone uses it any longer but you may want to look into it.
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