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Contagious For A Cure

ALS/MND/Variants.

To many of you reading this Website, these diseases are things you may have heard of, probably had no idea.

Imagine have a disease that most medical professionals don, understand. Having a disease that is completely heterogeneous, a snowflake if you will. But that snowflake is deadly. Most of you dumped ice on your heads, you donated feeling like you were helping, but the thing is you were never shown why.

This disease is isolating, horrifying, humiliating, and brutal. Watching family members pass away, for most it is the most horrific thing they have ever witnessed, it leaves them completely broken. These same families are then repeatedly asked for donations, from an Association that has countless millions in the bank.

Speaking out for those families has become my will to not stop.

I have been blessed beyond measure to be granted a rare form of the disease, granted time. I am a private person, and those in my family did not ask for this fight. But with time and knowledge comes responsibility.
I am far from perfect, my flaws to many to mention, my mistakes countless. But if I can do one thing, it, make the World see through these people who have lost or our fighting the battle, that they matter.

I hope that the World is once again kind. On a personal note, let’s remember disease of the brain, the most complete of brutal. This disease is 90 percent sporadic. And at least 10 percent genetic. I want everyone who reads this tonight, to think of the implications……

My struggle has been private…. shame, worry, embarrassment, too much knowledge, not enough options. It might just take a Mom to really get it.

Your voice is what I need. More than that your empathy towards more than meets the eye.

About Annie

My name Annie ALS has become my symbol, if you want to know why, think of the implications for your family, If you were me. Trying to let them have some normalcy, yet facing a genetic ticking time bomb. They deserved privacy, yet the World needs to know.

My family is so very rare, maybe just 7 families like us, please study us, let me be a lab rat for countless others, so that they may have a fighting chance.

I need your help.

 

Giving the World One year to provide viable treatment.

Consider yourself invited and greatly needed.