There is so much hate and controversy about this ALS ice bucket - TopicsExpress

There is so much hate and controversy about this ALS ice bucket challenge. Most of it.. coming from people who have no debilitating illness or know anyone with one. Let me just give my own opinion. Not that Its expected to change your views.. but maybe you can try to see it another way. I accepted the challenge myself and made the video and donated. Why? Bc If ANY number of Ilianas long list of diagnosis had extreme exposure such as this... I would be overwhelmed with joy. You guys dont realize that it is NOT just about money. Its not. Money to a foundation/organization is a huge bonus. However, sharing information through posters, videos, wearing T-shirts, word of mouth... is meant to bring awareness to a community who needs it. Which is many. When I see other people wearing shirts and sharing videos to explain or support epilepsy, or hydrocephalus, or spina bifida, or chiari malformation, or SPD, or agenesis of corpus callosum, or g-tube feeders, or tracheostomy wearers... (yes, this is a list of some of Ilianas conditions) I feel a huge sense of appreciation from those who are bringing attention to our community. Why again? Bc I feel alone, all the time. Nobody knows what these conditions are that know me, They dont even ask. We want to feel accepted, acknowledged, and understood. Awareness has made differences in various forms besides that, though. Such as... recognizing the need for better facilities to accommodate the needs of disabilities... Look at how many states have now legalized medical canabis. It was through awareness that everyone spread that has led to this great change!!! Awareness also has contributed to the prevention of birth defects and other conditions! Awareness is never just about donating money. I will continue to advocate for the things I can, when I can. I never wish upon any of you, to have to understand where I am coming from through personal experience. So for a minute... maybe put yourself in our shoes. Sorry for this if it offended anyone, I am not mad at any of you. However, Its hurtful when you cant even try to relate and understand.

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