A FUNDRAISING EFFORT FOR ALS RESEARCH
In Honor of Linda S. Quinlivan
You never think it's going to "happen to you". Nobody can see it coming. When my mother was diagnosed with ALS (Amyotrophic lateral sclerosis) in January, it was like a reaming shot had hit the heart of our family.
There is currently no cure, very few treatment options for patients, and the exact cause is unknown. ALS, colloquially known as 'Lou Gehrig's Disease', is a neuromuscular disorder characterized by the death of neurons in the motor cortex of the brain, the brain stem, and the spinal cord. It generally presents as progressive weakness, and eventually paralysis. Only one person out of every 100,000 develop ALS each year.
As we came to know more about this disease it was clear that there was, in reality, very little knowledge about the disease in comparison to other terminal illnesses. While research has been conducted, progress is seemingly slow.
My hope would be that, someday, there will be either effective treatment to slow the progression of ALS, or some way to stop it in it's tracks once and for all. I know so many other people feel the same way I do...whether its ALS, cancer, or any of the other things that threaten the lives of our loved ones.
100% of these funds go directly to ALS research. It's time for us to take a stand, help build a Community of Hope. Every donation will help, no matter how small. If you don't have the means, simply sharing this to spread awareness means so much.
I will be updating this page's blog intermittently as we strive reach our goal and beyond. My mom, dad, and I thank you eternally for your support in friendship. Who knows, maybe there's someone in your life who needs to hear those three simple words.
On the 'Ice Bucket Challenge', and All of Your Support
I can't believe how far this has come. All I made was a single, non-intrusive post to Facebook, and you all ran with it. In just over a week, you guys have raised almost $3,000 for ALS research! As of this post, we're now the top fund in Upstate New York! (Nothing like a bit of healthy competition for a good cause, eh?)
When I first heard of this 'ALS Ice Bucket Challenge', I was a bit wary about how successful it would be, but my doubts were quickly proven to be unfounded. Since it's inception, the Challenge has helped raise some $15 million dollars in donations. Celebrities, friends, and people across the globe have participated. I've caught wind of some animosity, some seeing this as another example of "slacktivism", but I don't feel the same way. Whether the person who posted donated $100, $25, or nothing at all, they helped by simply spreading the word. I honestly doubt that some people even knew was ALS was before all this! The actual ice gimmick was what made it go viral; it's fun and it works perfectly with our increasingly brief social media (limited characters, video length). Many of my friends who had ice water dumped on their heads donated anyway, which just goes to show that it's more than just a fad.
I kept this funding page a secret from my mom for a while... I wanted to be near or at my original goal when I showed it to her. It's gone better than I could have ever anticipated. When I showed her and explained how it happened, she had tears in her eyes, she just couldn't believe it. Struggling with accepting a terminal illness is unimaginable, and she was understandably having trouble sharing her condition with others. I really think that this whole thing has helped her be more open, to others and even to us, her family.
I'm going to try and thank you all individually, if I haven't already. Once again, I can't express my gratitude in words. You've shown so much love and compassion. I'm forever in your debt.
After clearing the initial shock of the diagnosis, my own mind started calming down a bit. I knew that May was officially ALS Awareness Month, and also that Mother's Day was coming up. I had trouble thinking of ideas for what to get my mom this year...I felt like nothing I could say would accurately describe to her how much I truly care. That's when I began thinking about starting a fundraiser.
Luckily, I found that the ALSA provided the necessary tools, and here I am finishing everything up as we speak! It's technically the day after now, but I wanted to make sure I had everything ready to show her and get things started right away. I know my mom, she'd be happy with just a hug and a simple 'I Love You' for Mother's Day.
But I want to give her a thousand this year.
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