Everyone’s Talking About It

#IceBucketChallenge, you’ve done a great job at playing into our insatiable need for shameless self-promotion. Just a few things:

  1. How many, financially stable, people have done the Ice Bucket Challenge but haven’t donated to the “cause”?
  2. The ALS Association has prepared a concise list of answers to false claims made by some journalist on some site somewhere. However, the first claim (only 27% of funds goes to research), actually seems to be true – if off by 1% – as seen in the ALSA chart here.ALS Budget
  3. In that vein, isn’t the Public and Professional Education* of people about ALS mainly a form of fundraising? Educate, raise awareness.. i.e. get people interested so they’ll donate. Aside from advancing legislative policies, the only bit that isn’t fundraising is teaching people how to care for those with ALS – which should fall under “Patient and Community Services”, surely.

    Actually, a large part of that section could be shuffled around into the other three main sections: fundraising, community services and research (researcher recruitment via education). It doesn’t seem necessary to say that such a large percentage of their budget goes towards “Public and Professional Education”. With a little shuffling their budget could seem more.. well-spent, less random.

That said, I’m clearly not a budgetary professional, the ALSA is obviously under a lot of scrutiny having thrust itself into the public eye, and I’m sure there are many other organisations who have a much worse distribution of funds.

I’ve also just been riled by the fact someone has recently nominated me and

  1. I refuse to waste the water (though that’s just a convenient excuse of course),
  2. I think there are better causes to support seeing as ALS is now well-funded for at least a few years, and
  3. I’m of the generation that believes nothing bad will ever happen to them; there’s no chance I could get ALS, I’m impervious to disease.  *eye roll*



*Public and Professional Education:  Through public and professional education, The Association educates healthcare professionals, scientific communities and the general public about Lou Gehrig’s Disease and the work we do in assisting those battling ALS. Our Public Policy Department works with national and local legislators as well as government agencies to advance legislative policies that benefit ALS families. Each year, The Association’s Public Policy Department hosts National ALS Advocacy Day and Public Policy Conference, whereby members of the ALS community travel to the nation’s capital to educate Congressional members about ALS and to share their stories about how this disease has impacted their lives with these national legislators.



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