Video: Ice Bucket Challenge – Take 2!

I had a lot of reservations about the ALS Challenge. I’ve been challenged several times by friends and haven’t risen to the occasion yet. Mostly because I don’t like feeling a social pressure to do something trendy. Then there’s also the whole wasting of water. And the silly act of making a big deal out of getting doused in the middle of a scorching summer. With water. And ice. Gasp.

But moreover, there’s the people with ALS. And their sufferings, and their family, their friends, the lack of awareness, and lack of money. These are a much bigger deal.

So I thought, why stop there? It’s WONDERFUL that ALS is finally in the spotlight, finally known to just about every human with an iPhone. Finally they are flooded with love and donations and empathy. This movement, while silly, is truly incredible. Let’s take a moment to think about the humble beginnings. The fact that it’s a rare disease, it’s without a cure, it’s under-funded, and largely ignored. And further, if these oppressions prick your heart at all, then absorb this: there are literally thousands of rare diseases out there that are without cures, funding, research, or attention.

I have a proposition for you. Yes, YOU!

Let’s lift up ALS and step it up a bit: TWO Buckets! TWO Charities! Pick a rare disease, the list is OVERWHELMING. Make any donation you can afford, and season it with all the love and attention and ice cubes you can muster. Then let’s all be trendy-cheesy-soggy together.

Which one did I pick? Visual Snow Syndrome. It’s a rare visual disorder in which sufferers see what looks like tv-static or “snow” in their entire field of vision at all times. It never goes away. There is no treatment. It is mostly unheard of (even in the medical field) and often those who have this syndrome are misdiagnosed with migraines, or just plain looked at like they have multiple craniums.

I know this personally because I also suffer from Visual Snow Syndrome. Find out more in an article I wrote which details my story here. For the research donation page, please go here.

Consider yourself DOUBLE DARED! Even if you’ve done the dunk, I dare you to step it up. TWO Buckets! TWO Charities! ALS and another rare disease of your choice. Pick one. Pick up a bucket. Make a small donation. Make a huge difference to someone else.

For a laundry list of rare diseases visit this site.

Are you game?!


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Comments

  1. Daphnie mom says:

    I HAVE THE BEST DAUGHTER’. I AM SO VERY PROUD OF YOU JACKIE! You are one special LADY! GOD BLESS YOU …

  2. Daphnie mom says:

    GOD BLESS YOU BABE…YOU ARE ONE AMAZINGY WOMAN! I THANK GOD FOR BRINGING YOU IN TO our lives….I LOVE YOU JACKIE

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