Remembering Harvey

Living Under a Dark Cloud….

I’m not going to lie about this nor am I going to try to sugar-coat anything, I am scared to death of ALS.

So far, this horrible, wretched, God-awful disease has stolen the life of my father, my aunt, my grandmother and now, just a month ago, one of my two brothers.  For a disease that is supposed to be only 10% hereditary, that’s a really frightening number of losses in one family and I’m terrified thinking about who could be next. I’m afraid for all of us – my other brother, my cousin, my step-sister and also the next generation – my nieces and nephews. If I ever feel anything that’s off – a weakness when trying to open a jar or unscrew something, or when I have any sort of twitch or numbness, I’m absolutely petrified that it’s a symptom.

From the time that my brother learned of his diagnosis until his death, it was only 4 months. Four short months – the gene that is running rampant in my family is called SOD1 and it’s a real bastard (according to my friend, Adam). My father lived 9 months after his diagnosis and my brother only 4 months. This is not fair.  Yes, the average life expectancy after the diagnosis is 1000 days but not for the gene that is in my family.

And the sucky thing is – there is no radiation treatment, there’s no chemotherapy. Right now, we have nothing, but hope. Hope that someday this disease can be stopped, or at the very least, slowed down. 

This summer, social media was bombarded by the ALS Ice Bucket challenge but you know what, it raised awareness and over $100 MILLION to the cause. But it’s not enough, we need more people donating money to research so it doesn’t affect another person in my family. We are all scared every single day!

My favorite ice bucket challenge video is from Anthony Carbajal, it was so well done and he does a great job of explaining the fear he’s lived with since his mothers’ diagnosis and the fear my family lives with every single day. If you haven’t watched his video, I strongly encourage you to do that  (http://www.youtube.com/watch?v=h07OT8p8Oik) and then think about how you can get involved and help make a difference for the people, like me, who have this fear EVERY SINGLE day.

I just feel like I CANNOT lose one more person to ALS, I can’t.  But I need so much help from you, from your friends, from your family. My fundraising efforts are just beginning and I will do whatever I can to help stop this nightmare.

Thank you!

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