Originally posted at Talk to Action.
The Ice Bucket Challenge has been an outstanding success in raising both awareness and research money needed to find a cure for Amyotrophic lateral sclerosis (ALS) . As of September 10, 2014 the ALS Association has raised $111.6 million in Ice Bucket Challenge donations. The wildly popular charity stunt captured the hearts of millions of people last summer bringing together former presidents, movie stars and ordinary citizens in an effort to create a greater awareness necessary to cure a hideous muscle disease. They did it by pouring ice water over themselves and then challenging friends and neighbors to do the same.
The challenge is important because ALS (commonly known as “Lou Gehrig’s disease” (because of its fatal impact upon the life of the great New York Yankee first baseman) is still considered an “orphan disease” — defined as
“A disease that has not been `adopted’ by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.”
Fortunately, the Ice Bucket Challenge has gone a long way in correcting that dynamic.
But all this warm hearted, spot-on humanitarianism did not deter Archbishop Dennis M. Schnurr from sounding a sour note. It seems that his eminence wanted to seize an opportunity to change the subject to stage a culture war battle over stem cells.
It is not that Cincinnati prelate did not want his diocesan members to take part in the challenge; instead, he did not want them to send any money to the ALS Association. Perhaps without realizing the consequences, he was making the phenomena more about stem cell ethics then being focused on cure this dreaded disease — or perhaps, as a more cynical mind would suspect, he was deliberately trying to change the topic of conversation.
But before we get to our story, let’s note that Schnurr is the kind of culture warrior many of us hoped might seek a truce in the era of Pope Francis. Unfortunately, that has not come to pass. Schnurr seems to seek to impose his personal moral parameters, even upon those who do not share his Catholic Faith.
For example, as CNN reported this past May:
(CNN) — If you want to teach at a Catholic school in the Archdiocese of Cincinnati, regardless of your religion, you must be willing to sign a detailed morality clause that critics say focuses on “pelvic issues.”
The revised contracts forbid teachers from — among other things — living together or having sex outside of marriage, using in-vitro fertilization, a gay “lifestyle,” or publicly supporting any of those things.
The system’s 2,200 current teachers must sign the agreement to stay on the job.
Anyway, here is the reason behind culture war commander Schnurr’s lastest exploit. The Washington Post recently explained, “That’s because the [ALS] association funds a single study using embryonic stem cells, mainly through the funds of a single donor.”
To that end, the Archbishop asked those who took part in the challenge to send the matching donations to an institution such as The John Paul II Medical Research Institute which, while doing extensive research on adult stem cells is not focused on curing ALS.
The Post continued: “In a statement to the American Life League, ALS Association spokesperson Carrie Munk said that donors are able to specify whether they want their funds to support embryonic stem cell research or not.”
Schnurr created a false equivalence in order to try to direct donor funds away from from an organization that exclusively engages in ALS research to an institution that does not do ALS research. The ALS Association is completely focused upon curing this one fatal disease while the John Paul II Medical Research Institute is not. In fact, the Institute, which has only three paid staff, has done no work on ALS (Its focus has been on cancer research). And while The National Catholic Register reported that between August 15 and August 20, 2014 “received 350 donations for $15,000 dollars,” The Gazette of Iowa City reported otherwise. The newspaper directly quoted the Institute’s CEO who claimed that the Institute “has gotten “hundreds of thousands” of dollars in donations from people who want to support research on Amyotrophic Lateral Sclerosis (ALS), but don’t want the research done with human embryos.”
The archbishop used the Ice Bucket Challenge to mooch off of the campaign’s newly found heightened awareness to raise money needed for heretofore underfunded research. Schnurr managed to siphon off both attention and hundreds of thousands of dollars that might otherwise have gong to do actual research into finding a cure for this orphan disease. And in so doing, kicked instead of assisting the orphan.
For this Catholic writer, to equate an embryo with a natural born human being is tantamount to equating an acorn with a fully-grown oak tree. While there is clearly a relationship between the embryo and the human they are not one in the same, just as an acorn and an oak tree are not the same. A significant portion of the embryo is the placenta, which is discarded as “afterbirth.” But what is more strikingly different is that a natural born human being has a face. And it is by looking into the face of an ALS victim we see the vital necessity of exploring every avenue that may lead to extinguishing this horrible disease.
And to that end, we should all look into the face of a victim of this illness. William M. Tendy Jr., who is pictured below.
Affectionately known as “Billy” to his family, William Tendy was an extraordinary person. After a difficult two-year battle, sixty-year-old Billy succumbed to ALS. A dedicated husband and father, he was a private practice attorney who successfully took on the death penalty while commanding the respect of the legal community. In his August 26, 2014 obituary in the New York Law Journal his law partner said of him, “Bill was very compassionate to his clients. He didn’t treat clients like files” while another lawyer who was his friend described him as a “truly gifted trial attorney.” In that same piece a former Court of Appeals Judge warmly recalled, “It was astonishing how he gained admiration of the judges,” said Rosenblatt. “They often commented he was a staunch advocate, a model of politeness, hard work and fairness. That was well known and widely reported.”
It is often said that you can tell a lot about a man simply by looking in his eyes. When you look into Billy Tendy’s eyes in the picture above it is easy to see the basis for such plaudits and fond memories. His eyes were the centerpiece of a warm face that simultaneously reflected kindness, intelligence and strength; they complimented a smile that exuded self-assurance without arrogance. And now that is all gone, stolen by an illness that gets too little attention and too few dollars for research.
I can tell you from my own 30-year battle with a lesser form of muscular dystrophy what happens to the body. Month by month, sometimes week by week, and even they by day the ability to do even the most basic tasks desert you. At first it is difficult to stand up from sitting position or to step up from a curb. Being able to play a game of catch with you son becomes an impossibility, let alone hugging your wife and children. Eventually, you need help with the most mundane tasks such as showering and eating a meal. The constant deterioration is selfish and causes friends and family to do things for you such as taking a simple drink or scratching an itch on the head. And as your body turns to nothingness your mind remains unchanged and alert slowly becoming imprisoned in a castle tower that used to be your healthy body.
But that experience is nothing compared to what Billy Tendy went through. His illness accelerated 20 times faster than mine ever will, compressing more than my 30-year of atrophy in less than two years.
Perhaps we should give the archbishop the benefit of the doubt. Perhaps he did not realize the consequences of his comments – although I, for one, am not so sure. (On the other hand, his insistence that Catholic school employees abandon their own moral code and legal rights as a condition of employment, suggests that maybe Schnurr is more wily than he is short sighted.) Either way, in his overzealousness to battle embryonic stem cell research he has done a disservice to all the victims who suffer as Billy Tendy and his loved ones suffered.
Filed under: Catholic Right, Religion and Politics | Tagged: ALS Association, Amyotrophic Lateral Sclerosis, Archbishop Dennis M. Schnurr, Archdiocese of Cincinnati, Catholic Right, Ice Bucket Challenge, John Paul II Medical Research Institute, medical research, stem cell research, William Tendy | Leave a comment »