I feel the need to say something about this newest Internet/Facebook sensation. I’m really quite conflicted about it. And my wife is even more so.
We have some “history” with ALS, also known as Lou Gehrig’s Disease. In early 1998, my wife’s father was diagnosed with it. It was heartbreaking to watch him decline, fairly quickly, over the next year and a bit more – he died in the summer of 1999, a wasted shell of a once-robust man. My mother-in-law never really got over it, and his absence has been a hole in my wife’s – our – family ever since. The first “Ice-Bucket Challenge” I remember seeing, just a couple weeks ago, was of my wife’s niece, who was only two years old or so when her “Poppa” died, taking up the challenge explicitly in his memory: [LINK – but I don’t know if Facebook videos will show up].
My wife’s family’s story is not unique, by any means. ALS is a devastating affliction, that seems to be on the rise for whatever reason. My wife and her siblings have supported ALS research in many different ways through the years – ALS Walk-a-Thons, fundraisers, donations, and so forth. And that support has pretty much all been channeled through the ALS Association, the organization that has been the major beneficiary of the Ice-Bucket Challenge.
When I first heard of, and saw my niece’s participation in, the Ice-Bucket Challenge, it sounded like a great idea. And over the next few days I marveled at how it exploded all over the Internet, Facebook, out into the wider media. I don’t really know what the state of ALS research funding was before, but it is getting a huge infusion of money, as well as attention like never before. Which could only be a good thing, right?
Then came a dash of cold water – pardon the pun – when a friend of ours posted a warning that people should be careful to know what they are supporting when they donate to ALS research funding, at least if that funding is channeled through the ALS Association. Because ALS research sponsored by that organization includes research based on embryonic stem cells, and although the ALSA web site’s “Primer on Stem Cells” [LINK] dances around the issue, it does not disavow such research now nor in the future: “Most stem cell research in ALS is currently focused on iPS cells, which are not burdened with these issues” [my emphasis].
For pro-life Catholics, that is absolutely unacceptable, because embryonic stem cells are a product of abortion – and whatever may end up being a benefit of such research, the ends do not justify the means which is the murder of a living human being. I am not going to debate this – it is simply a fact. Human life begins at conception, and the deliberate termination of the life of an innocent is wrong.
Our friend’s post regarding this was just the leading edge of a wave of similar news articles, blog posts, etc., that appeared over the next couple of days, such that by last weekend anyone keeping up with news regarding the Ice-Bucket Challenge had to be aware of the issue. I did some reading on the issue over the same period – even though I have not as yet been Challenged, I figure it’s coming,* and I wanted to have informed moral clarity in my response. Perhaps the best overview I found is this blog post by Fr. Michael F. Duffy at Patheos, “The Moral Problem with the ALS Ice Bucket Challenge” [LINK]. Fr. Michael suggests the John Paul II Medical Research Institute as a “morally acceptable” alternative to the ALS Association [LINK]. A few days later, the Archbishop of New Orleans issued a statement that Catholics may in good conscience participate in the Challenge but likewise should donate in a morally acceptable manner to such an organization as former New Orleans Saints player Steve Gleason’s “Team Gleason” [LINK]. [LINK]**
That’s what I’ll be doing. Should an Ice Bucket Challenge come my way, I will state these issues clearly in any video I post, and donate to one or both of the above recommended research funds. They will also get my future support rather than ALSA. Now that I am aware of ALSA’s stance on embryonic stem cell research, I can no longer support that organization.
Incidentally, the suggestion I have heard more than once that ALSA allows donations to be “designated” not to go toward any research based on embryonic stem cell research is no solution. That is quite blatantly a shell game. Donations do not work that way. If you donate to the organization in any way, even if they purport to “honor” your wishes, all that means is they will shift funds from another donor to cover the projects they underwrite. Your designation will make no difference except to salve your own conscience.
Thanks for reading.
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*Although the fact that I have not is fitting. The stated purpose of the Challenge is to raise awareness as well as support for research, and most people who know me – and my wife – know our story and that we are already aware and do support. We don’t need the Challenge, and to Challenge someone already involved to the degree we are would seem to me pretty pointless, almost callous.