The Ice Bucket Challenge and Rare Disease Awareness

A couple of weekends ago, my sister and cousin were both challenged to do the Ice Bucket Challenge to raise awareness and funds for ALS.  I walked down with my friend’s two-year-old son, Maxx.  He was very curious about this “getting soaking wet.”

So my sister and cousin both recorded videos of themselves getting soaked and in turn challenged other people.  I have seen dozens of videos of my friends doing the same thing.  Most of them have also donated.  Some have donated more to not do the challenge.  It has been a big thing in Boston and is also happening in other parts of the country.

I knew it was a matter of time before people got upset about this.  I have seen several articles about how it’s better to just donate, how this is taking money from more deserving causes, how this is taking attention from world events, and so on.  I have said it before, and I will say it again – you are allowed to feel however you feel.  You do not have to agree with me.  I just ask that if you want to disagree, you remember that I am a well-intentioned person who would appreciate some courtesy. 

Someone texted me this afternoon to ask if I had seen an article on a site read a lot.  I am not naming the site.  I will not be reading there after this article.  In this piece, the author talked about how the Ice Bucket Challenge was a waste of water, and we shouldn’t be doing this because California has a water shortage and she has had to cut back on shower and gardening. 

I wish I were kidding, but I’m not.  The comments were mostly from people who supported the awareness and funds raised by the Ice Bucket Challenge, but there were a few that really bothered me.  In particular, one of them, from another writer for this site, reiterated that this taking funds from other places.  She then commented that the awareness it raised was meaningless because awareness does not save lives.

That was the point at which I got really pissed.  The author of the article likes to complain about stuff, so while I was disappointed by this opinion, I wasn’t surprised.  But a second author for the same site saying that rare disease awareness doesn’t even matter?  Seriously?

Fundraising is hard.  When I walked the 3-day, I had to raise $2300 per event, multiplied by the number of people on my team.  The years I walked were largely those affected by the recession, and raising the money was exhausting.  I stood on corners with signs and coffee cans asking for donations from drivers.  We were liable for any money not raised, which more than once caused me financial problems.  People are not looking for somewhere to give money.  They are sometimes moved to give money when they come across a worthy cause.

This is my opinion on the Ice Bucket Challenge: I feel good about it.  Some people in the mast cell community are upset that so many people are donating to ALS and not mast cell disease.  I understand.  But I believe that if we came up with a clever marketing hook like this, they would.  I give them a lot of credit for cleverness.  If we want to raise that much money, we need to step up our game.  I’ll take that challenge.

The idea that awareness is useless is really insidious, and for people with mast cell disease, it is untrue.  I rely heavily on the people around me to be aware of my disease, know how to recognize anaphylaxis, and know how to use an Epipen.  I am in danger when I alone in a sea of people who have never heard of my disease.  I am in danger of trained medical personnel looking at my medic alert bracelet and having no idea what mast cell disease is.  People with mast cell disease need people to be aware of their disease and the fact that their sensitivities need to be accommodated to avoid anaphylaxis.  So for these people, awareness could save lives.  Literally.

This article really bothered me.  People with rare diseases don’t deserve research funding because you have a water shortage that means you have to conserve water to garden?  As if the two of those things are in any way related.  As if you deserve to grow vegetables more than 30,000 people in the US with ALS DESERVE TO LIVE? 

I haven’t been challenged (I think this is out of consideration for my PICC line), but if I were, I would put on a Drypro and do it.  Awareness is important.  Research is important. 

The rare disease community is small.  From the mast cell community to the ALS community: We support you.  You matter.