Why I Can’t Accept the ALS Challenge

By Matt Rooney | The Save Jersey Blog

dana redd
Mayor Dana Redd (D-Camden) participates in the ALS Ice Bucket Challenge posed to her by U.S. Senator Cory Booker (D-Twitter).

I’ve received several ALS “ice bucket challenges” in recent days, Save Jerseyans, and I don’t fault a single one of my friends out there in the social media digital ether for it. Thank you for trying to include me. Sincerely.

Please don’t think I’m unappreciative of what my fellow humans are trying to accomplish out there. Amyotrophic lateral sclerosis (ALS), more popularly known as Lou Gehrig’s disease, is an insidious neurodegenerative disease affecting everything from speech and swallowing to basic mobility. Experts estimate that 30,000 Americans suffer from the disease. It’s as fine a focus of #hashtagactivism as any.

But I can’t accept the challenge. I hope you’ll understand why.

It’s not because I’m afraid of cold water. 

My concern is where the money might go. Hint: what KIND of research would be financed by my hypothetical promotional activity, either directly with my cash or through other donations made possible through my advocacy.

You need to understand where I’m coming from outside of the context of this viral phenomenon. Many of you are coming from the exact same place. At the core of my personal belief system is the notion that no life is intrinsically worth more than another life. We’re not born “equal” in the sense that we’re all able to run equally fast, or complete math problems equally well, or even love one another with same level of selfless intensity. We are born with an equal share of God’s perfect love and, on a related and highly-relevant note for this instant discussion, equal entitlement to natural rights. Life, liberty, and property… the building blocks of our American constitutionally-enshrined experiment.

So when I found this nugget on the ALS.org website, I had to seriously rethink my initial inclination to grab an ice bucket and dump it on my head for charity:

“Adult stem cell research is important and should be done alongside embryonic stem cell research as both will provide valuable insights. Only through exploration of all types of stem cell research will scientists find the most efficient and effective ways to treat diseases.” [Emphasis added.]

Yikes. How disappointing is that?

PEER PRESSURE: I spent a few days deliberating how to deal with ice bucket challenges being thrown my way.
PEER PRESSURE: I spent a few days deliberating how to deal with ice bucket challenges being thrown my way.

While 30,000 souls battle the cruel symptoms of ALS in this country at any given time, our nation also plays host to approximately 17 abortions for every 1,000 U.S. women on an annual basis.

My conscience is feeling more than a little strained at this point. How can I donate money, or ask YOU out there in Save Jersey Land to donate your hard-earned money during these tough economic times when plenty of cash-starved worthy charities are vying for our limited resources, when this particular organization thinks infanticide is a legitimate way to save other human beings?

I can’t. I won’t. That’d be sending the wrong message no matter how noble our intentions might be.

Yet given the challenges facing so many dealing with ALS, and my understandable desire not to be rude to the folks who mentioned me in their YouTube ice bucket videos, I might’ve still been able to look past this one particular organization’s regrettable ethics IF I hadn’t seen evidence that it was redirecting donated dollars towards ghoulish embryonic projects. Then I found a LifeNews.com article relaying how ALS.org gave big money – reportedly $500,000 – to an organization that has run a clinical trial with embryonic stem cells.

Sorry, ALS.org: Soylent Green is people.

Now, I don’t believe in throwing my hands up and checking out either. Heck no. ALS-afflicted citizens deserve our support. Other pro-life bloggers are researching ALS research alternatives to ALS.org and I encourage each of you to do so.

This is also an opportune time to do a gut check of sorts. We should all put the buckets down for 5 minutes and consider the effect that social media activism is having on our culture – and ourselves as actors in it. As a political blogger with plenty to say, I very much believe in this medium’s capacity for acting as a vehicle for good, yet I also recognize how instant-connectivity is a double-edged sword, making it much easier for a “herd mentality” to develop. Which is all fine and good when the herd is headed in the correct direction, right?

But peer pressure blows perspective out of the water as we race to belong without first stepping back and considering each and every dimension before clicking “like” or share. How many of you stopped and investigated HOW your money would be spent before emptying the ice cube trays? Exactly. You shouldn’t feel bad about it! That’s not my point. You should feel a little weird and more than a little prone towards caution in the future.

So don’t look at this as a call for inaction, Save Jerseyans. I’m asking you to be as active as ever and creative, too; what we’re looking for is a higher level of self-awareness the next time a Facebook buddy tags you with the best of intentions.

Comments

comments

44 thoughts on “Why I Can’t Accept the ALS Challenge

  1. I was challenged by 3 people. I’m making a donation and matching that donation to an org that provides clean/safe drinking water rather than dumping a bucket of water on my head. Posting about it later. You can make a donation to another charity that supports ALS in other ways.

  2. All good points. Social media has turned people into “me-too” zombies, willing to do anything to be part of the crowd.

  3. The challenge was to raise awareness for ALS. Last year they raised 32,000. So far since the challenge started they have raised over ten million dollars. I say it worked and the people complaining about it should be ashamed of themselves. It’s a horrible disease that not many even knew existed until recently.

  4. Respectfully, you’re missing the point. I’m not saying it wasn’t effective. It was. I’m also not saying the intentions of the participants were blameworthy, nor am I saying all of the money will go to waste. I’m saying that the possibility of my donation funding research fueled by dead children is unacceptable. Unless ALS.org can guarantee that they won’t subsidize embryonic stem cell research with my donation, then I’m going to look for other places to make a difference.

  5. It didn’t start as an ALS thing it was name a charity to donate to. I did it and it was the Kidney foundation. Kidney.org. so just pick someone you feel is worthy and do it!

  6. I never thought about this. I accepted the challenge and made a modest donation without a second thought. Now I see that Matt has raised a good point – a very cogent concern. I’ll be more careful in the future before I make a knee-jerk donation to any cause or charity.

  7. I agree with Matt. We have to be careful to know where our charitable donations are spent. I asked my Catholic school to raise money for a pro-life breast cancer charity i/o Komen.

  8. I personally know this place and they do no research but they personally help those who are affected who do not have the financial means to buy special equipment that they need. My brother, Al Marble, died of ALS . He had been safety director at the Exxon Valdez oil disaster and moved back home to Gulfport Ms where he died shortly after the BP oil disaster. He wanted his expensive power chair donated to Stu’s ALS Guardian Angels and that is exactly what happened. I have seen Stu give donated vans away that were wheelchair friendly . Please, go to his site and see all this man has done just because he cares..It is totally a trustworthy place to donate things to and money.. https://www.facebook.com/ALSGuardianAngels

  9. I totally agree with you! I found that little nugget on the page too last night and copy and pasted it as I was going to discuss it! Guess what I went back today to it and they had deleted it along with the scientific studies that talked about the results of their embryonic research. If you click on your page link it is no longer in their either.. Rather interesting huh? I even went through my browser history to click on the exact link and it says the page no longer exists! They definitely were persuasive in why embryonic research should be done before and now it is re-written from a neutral standpoint. Let me know if you can find it still?

  10. I stand on the pro-life side as well, but these babies are still being aborted. These studies are done because they have a baby that has already been aborted. It’s purely taking the opportunity they’re given. Your argument would be the same as just rejecting organs from the deceased because you think doctors are purposefully murdering people to harvest their organs. I’m not saying abortion is right or justified, but I’d rather get at least some good out of an abortion than just letting them throw “it” in the garbage. You’re not saving lives by stopping embryonic research because the abortions will continue regardless. If I misunderstood, please reply.

  11. Property was the original purpose of that statement when they wrote it. Source-college classes on the constitution.

  12. Research on embryos does not cause more abortions to happen. Thus, even if I were to believe that abortion was murder, I could not possibly pin that on the researchers (unless you believe researchers are paying women to get pregnant and have abortions for their use; but that’s a little paranoid no?). Furthermore, the research can help us save more human lives. It sounded to me like you value human lives so I don’t understand what the problem is. Why should our mourning over a life lost stop us from saving other lives that we have the ability to save?

  13. I completely agree. And we that think embryonic stem cell research is unethical like abortion, cannot accept the use of any part of an aborted baby’s body because it becomes the same as accepting abortion. It makes no sense to us to snuff out a life and use a body, formed or unformed, to try to help save or extend another life. It’s hypocrisy. We’re not talking, here, about using donated organs from people who have died naturally. These are purposely, electively aborted babies. It’s not acceptable. And let’s add that embryonic stem cells have shown to be 0% effective in aiding the curing or healing of anyone with this neurological disease. The research using embryonic stem cells is fruitless.

  14. There is a major flaw in this line of thinking. How can an embryo, not considered a life, be beneficial to a post-birth individual? If that embryo has the stem cells that are important to life, then does that not make it a life? If we justify harvesting stem cells from the unborn knowing that is a life takes us down a barbaric slope. Just because babies are being aborted does not mean we should give further reason for women to abort their children in the womb. Do we want to be a society that makes it acceptable to take a life to save another? Who decides who’s life is more viable, who is more deserving of living? We are appalled at the barbaric and hate-filled acts of those ISIS terrorists. But are we not being equally barbaric. They behead because someone does not have the same belief system. We suck out or inject saline to kill an unborn in the name of choice and convenience.

  15. It is against the law to do use aborted fetus is for embryonic research. Embryonic research is done by using donated embryos. It is no different than donating organs from a deceased person that you love. Stem cell research does not have to be compared to embryonic research any longer. In fact people are using their own stem cells to create treatments for themselves or their family members. I don’t know who this guy is that condemns the ALS challenge. I do know he doesn’t have his facts right and he’s trying to cause a ruckus. A lot of people just like to do that. all I know is that money is being donated to help a good cause if you don’t want to be iced like I don’t because of medical reasons then send a check what does it hurts.

  16. My 5 year old suffers from a rare disease Bardet-Biedl causing vision loss, renal failure, obesity, digestive complications, learning and speech delays to name a few.It is just as tragic as ALS
    .The hope is these challenges raise awareness and funding. But I agree with the Author on where the money goes. All fundraising I participate in or ask others to I research the best way to help.
    Also, having worked in third world countries seeing first hand the lack of fresh water..I would rather see the ALS orginzation receiving funds to donate in some resonable fashion to a clean water/ water distribution group.

  17. Embryonic stem cells come from extra blastocysts not used for in vitro fertilization procedures for infertile couples. Blastocysts only last from 5-9 days after fertilization. Aborted fetuses are simply not a source of embryonic stem cells. Unless you’re against in vitro fertilization for infertile people desiring to be parents (like my wife & I), there’s no reason to be against embryonic stem cell research.

  18. I for one am also against IVF. My wife and I stopped fertility treatments when we reached that point and became foster parents instead. Our current foster daughter was born after only 25 weeks. Was she a human being worthy of protection at 24 weeks? At 23? 22? The only scientific answer that makes any sense is that we don’t gradually become life; we radically become human beings at conception. Any other answer is just the strong asserting themselves over the weak.

  19. The embryos used for stem cell research do not come from aborted babies, although there is a market for body parts of these babies. Most embryos used in stem cell research come from cases of in-vitro fertilization where the excess eggs are no longer “needed”, therefore the parents have given permission for them to be used for research purposes, including stem cell research.

    If we believe that life begins at conception then that would be no different than “donating” some of your already born children to facilities that would kill them for their testing and research purposes.

  20. There are a host of ALS organizations you can donate to. Do your research. Before dousing a very worthwhile campaign. Angels for ALS an organization of family members of ALS patients that have passed. They donate equipment to current patients that can not afford to purchase their own wheelchair or eye gaze computer to enable them to communicate. They would be most appreciative of your donation. We are not saying our lives are worth more than anyone else’s. We are saying our lives are worthy of consideration and at least trying to find a cure. Let someone give you a death sentence and see how you feel about a glimmer of hope for a cure.

  21. With all do respect sir. You are entitled to your opinion and reason for opting out based on your “moral” convictions . I also don’t disagree with doing your homework and following the money trail before making a hasty decision to donate to a particular cause. Research is never a bad thing, whether it’s something like this or, posting a news event, a viral chicken little post about facebook going to start charging or downloading fb messenger means you are basically inviting the NSA over for dinner. You are right on the money with that. Know what you are doing before you are doing it That being said, your comment about mass producing of stem cell will cause mass abortions is so completely outrageous that it’s comical. I can’t even picture that scenereo if I tried. Are you implying that women are going to impregnate themselves then turn around and get abortion in the name of ALS/stem cell research because it’s a good cause? I would like to think even the most staunch pro lifer would be skeptical of that conspiracy theory. Also,I find it rather ironic that you are all about protectng the life of unborn children to the point where it could improve the quality of live of someone with this debilitating disease but don’t find it the least bit offensive to donate to an organization that was named after a Pope who turned a blind eye in protecting actual living breathing innocent children that were sexually abused in the most vial ways by his fellow “lambs of gods.” Again so contradictory, it’s hilarious. .You boycotting the “ice dump challenge” is legitimate since you make it clear you are against stem cell research. You suggesting an alternative way to donate is valid, your self righteous finger wagging at those that already took part in it, while it doesn’t paint you in the most compassionate light, at least your quote unquote followers that haven’t completed it yet have something to chew on before deciding whether or not to do it, I just hope that the readers on the fence do their own research after reading your thoughts and opinions have enough pragmatic sense to connect the dots.

  22. Do you believe in organ donating? Isn’t a life lost to save another? These “lives” are already lost. The fetuses have already been aborted. It seems that people would rather the fetus go to a cause than just in a landfill. But, they might need logic to come to that conclusion.

  23. I agree that embryonic stem cell research is abortion, and I will not support it. However, I have a hard time agreeing with Christians who use that as their excuse to not do the challenge. You are broke And can’t donate? Fine, I get it, me too! You just don’t want to get cold and wet in the middle of August? I get that too! I live in Vermont, it was 60 degrees when I dumped a bucket of ice water on my head. Then I encouraged my friends and family to learn more about the disease, and donate money, if they can, to the ALS guardian angels, or to another support group for ALS patients. This disease is too tragic and affects too many people to simply not participate in some way.

    That being said, I truly do appreciate your pro life view on the choices you make.

  24. I’m also pro-life and in full agreement that we should always know where our donations are going. My son has received the ice bucket challenge, and when he does it, I will recommend that he research a charity and donate according to his beliefs. Here are two additional thoughts I’d like to pass along:

    1. ALS is a horrible, incurable disease, and those who have it, as well as their caretakers, have my deepest sympathies. What most people don’t know is that some ALS patients have been treated aggressively for Lyme disease and have made a full recovery, indicating that at least some ALS patients are actually misdiagnosed Lyme patients. The Infectious Disease Society of America, in its attempt to squash all information involving Lyme that does not fit their narrow and outdated disease model, refuses to discuss or research this possibility. If you or anyone you know has been diagnosed with ALS, please look into this. The documentary Under Our Skin is very enlightening, and I strongly recommend seeing it. Last I knew, it was available through Netflix, Hulu, and for purchase. (I am simply a Lyme patient and in no way associated with this film. Nor do I have any monetary stake here.)

    2. Why don’t hospitals routinely collect cord blood at the time of birth as a source of stem cells? If the family does not want to preserve it for their own use, it should be donated for use in bone marrow transplants and research. I was able to donate one of my children’s cord blood, but the hospital where my other child was born did not have the capability of accepting the offered donation. There is so much good that could come from making cord blood donations standard. It might not solve all of the stem-cell research problems, but it would at least provide a significant amount of stem cells with no harm done to anyone, born or unborn.

  25. No I do not believe in organ donation for that reason. It is using other people’s losses for other people’s gain. How horrible is that!? And they are hoping or worse praying for someone to die for their organ donation…Umm no. That just is not right when broken down in the simplest form. And besides many scientist have found that Adult stem cell research is much much more beneficial than embryonic research. The Adult stem cell is more pluripotent and effective than embryonic research but of course you would need both logic and research for this one.

  26. I would also like to add that the article writer is not saying he will not donate for this disease. For that would not be part of what the Pro-Life community is about. The writer is just saying that he will not donate to this particular charity because they will use embryonic stem cell research. And that is not Pro-Life to value one life more than the other and you said that it is okay to make use of the “fetuses” since their life has already been taken but would be horrified if they said that about someone close to you such as a family member. What if they wanted to use the skin would this then be okay? You wouldn’t be able to have an open casket funeral, now would you?

  27. I’ve given my support to ALS Canada. In its Q&A, it says, “We do not fund any ALS research that use human embryonic stem cells, nor have we ever funded any research involving human embryonic stem cells.” It also states elsewhere, “a number of the biggest breakthroughs made over the past three decades have come from Canadian labs.” It works with the community of international ALS researchers. There are definitely still ways you can ethically support ALS.

  28. Thank you for the heads up…I totally agree with your reasoning and I think Krista in the comment prior to mine also makes a good point. I disagree with anyone attacking your opinion as though they have a righteous moral indignation with your choice and they are the final say on this matter. I can also empathize with those who have a personal connection to someone who is struggling with any illness that is considered lethal and supporting any kind of research that
    offers hope. However, we all have to act according to our conscience, to do otherwise is moral cowardice. Just my opinion.

  29. I’m sorry… but while I respect your right to make your own decisions, I feel that you are a bit ignorant to the concept of embryonic stem cell research. It’s not a form of infanticide — scientists don’t go around aborting babies for their cells. Perhaps in the past, the only way to gather them was to remove the blastocyte before it started developing, but researchers are now able to take cells from the amniotic fluid — the liquid that surrounds the fetus in the womb. It causes no harm whatsoever. My boyfriend studies ALS/FTD, but if you don’t belive me, check this out: http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_3-7-2012-14-3-55

  30. Most people waiting for an organ are not hoping someone will die so they can have the organ. They know people die every day are they are hoping that if someone dies who is an organ donor, the organ will be for them. Organ donation is a beautiful way to help others after you die. Many transplant recipients meet the family of the donor and mourn with them. My son has been waiting for a liver for over 5 years and comes to tears just thinking of the fact that someone will be suffering the loss of a loved one and he will be given the gift of continued life. He is 20 years old, diagnosed with liver disease at barely 2 months old.

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