"Some Final Comments About #Ice Bucket Challenge"

"Some Final Comments About #Ice Bucket Challenge"

There are not enough positive words to describe the miraculous impact the "Ice Bucket Challenge" phenomena had on those of us whose lives are affected by ALS. To sense the new people made aware of the disease and its impact on PALS and our friends and families lifted our spirits beyond anything most of us thought possible! And, an awesome amount of money was raised by and for The ALS Association (National and local chapters) and many other ALS organizations involved in the fight against this disease. Thanks goes to many people and whatever it was that caused the public's psyche to add the fuel necessary for this simple activity to become a highly successful craze.

Despite our overwhelming joy for the surprising results of the Ice Bucket Challenge some reactions have created some disappointment in some of us. First, there are the comments that seem to suggest that some people feel the ALS groups shouldn't have been the beneficiaries of the gifts because there were other starts that had a different intent.

Second, there are some high expectations that these funds will result in a cure and finally an understanding of causes. I share that high hope, but I sense there's almost an unrealistic expectation that this one effort will reap eternal results and no more awareness or fundraising will be necessary. Why do we expect the results for research relative to ALS to be so much higher or greater than any one of numerous other life-depriving diseases? I choose not to name names because my intent is not to criticize the advocates on behalf of other diseases, rather it is to create an apologetic for a similar playing field of expectations. We can all think of diseases that have seen some treatments developed as a result of walks, rides, and runs of interested and motivated supporters. Seldom have such advances meant the fight was over and events need no longer be held. The advances that hopefully will happen as a result of the ALS Ice Bucket Challenge probably end the need for further efforts. It's a war we're waging, not a single skirmish!

Third, I think many have somewhat of a misunderstanding of what was raised. My sense is that all the money that was reported raised nationally included much that was being raised by local chapters for their local Walks to Defeat ALS and thus only a portion of it will go to national for research. My point here is not to argue against more money going to research as a result of this year's outstanding effort! I absolutely expect more money (dollars and percentage!) to go toward appropriate research projects. I only wish to offer a cautionary and explanatory word about what's available to do what. I know not all local ALS Chapters are as highly regarded as the two chapters in Ohio. I have nothing but praise though for the local chapter and thus am bias in my support of their work. It's because of the Walk efforts that they are able to effectively perform their mission. I know some expect other than their mission from them but that's not what they are chartered to do.

Which brings me to my final comment for this blog post. There are numerous other worthwhile ALS organizations that are filling the gaps that exist between what the Association can do and other needs of PALS families. There are also numerous research-only efforts that are vital to the need to fight this disease on multiple fronts. None of us can get the job done alone. We all need to work together if we're going to ultimately win the war. We need to guard against stepping on one another's toes or areas of expertise. We need to guard against jealousy and envy and greed and pride. We all don't need to be involved in supporting research, especially when it will hinder us from performing what motivated our coming into existence in the first place.

I cannot say enough about how impressed I am with what some organizations are doing on behalf of PALS and CALS. The only one I'll mention is PHAALS (Playing Hardball Against ALS) because it's a group I know about, received help from, know many of the people they have helped, and its birth began in an area of the state in which I was raised and still have many family and friends. They are most involved in raising awareness by holding events at high school baseball games and other fundraisers. Their funds are primarily used to provide scholarships for the children of PALS and the fulfilling of personal dreams of PALS. (This isn't a research project so people will have to seek out groups doing similar things in their own area.)

O. K., I'm done. I'd like to write more but the fingers and hands say time to stop.