I am excited about the ALS #icebucketchallenge and the attention that ALS (Amyotrophic Lateral Sclerosis) is getting from it. It's a stupid gimmick, but those are exactly the kinds of things that go viral in the world we live in. This is bringing attention to a horrible disease, and I hope, quite frankly, that people are actually looking it up instead of just dumping ice water on each other.
In case you're new here, or you've forgotten, my mother died from ALS 7 years ago. As much as I hate the fact that she is gone from this world and I don't get to see her or talk to her anymore, I think she was one of the "lucky ones" that her form of ALS was fast moving and she sped through all the stages in only a year. I can't imagine how hard it is on the people (and their families) who have to live with ALS for many years.
Here's a link to a heartbreaking video that shows a little of what it's like to live with and care for someone with ALS. And this young man has it himself! (Major language warning there! Don't watch this one with your kids!)
I'm moderately excited about the more than $20,000,000 (that's 20 MILLION!) that have been donated in just a few weeks. At first, as I was watching all these videos on FB, I was under the impression that everyone was just dumping the ice water and not giving, but I was very wrong! ALSA has raised $53 million since July 29, 2014, compared with $64 million in all of 2013. Other research institutes are also benefitting from the ALS ice bucket challenge---like the John Paul II Medical Research Institute. I've given to the ALSA before without thinking about whether or not I find their research ethical. Now, having looked at the graph of where their money goes, I think there might be better options out there. In my opinion, not enough of those funds go to research, regardless of whether it's ethical or not, and even less goes to support the families living the ALS nightmare. But hey! JP2MRI will direct your funds to ALS research if that's what you want!
UPDATE: I guess I wasn't very clear about the issues Catholics face with donations that fund embryonic stem cell research, which is why one would choose to give to the JP2MRI, but my sister pointed out the ALSA position on stem cell research which isn't as bad as I thought. I believe Catholics can donate to them in good conscience and even note where they would like their donation to be spent. Personally, I'd still like to see a higher percentage of funds being spent on research and patient support.
The Kimberly Kim Foundation is one option for helping those families.
Although the Emory ALS Center was the initial beneficiary of funds raised, the Kim family quickly discovered how much families living with ALS need financial assistance. Home modifications, wheelchairs, handicap vehicles, and communication devices are but a few of the expenses families face. While insurance provides some help, a large portion is not covered; the financial burden over the years of living with the disease is enormous. The foundation will search for ways to ease this burden. Families living with ALS have enough challenges to face.
A cure would be awesome, so would some kind of treatment, but for those who may not see either of those things happen in their lifetime, the support of local organizations or ALSA chapters in providing all those things listed above is invaluable.
Do you know someone with ALS? Supporting those families might be one of the hardest things you ever do, but your help will be greatly appreciated.
- Meals for the family.
- Babysitting while the ALS patient goes to the doctor.
- Sit with the ALS patient while the caregiver gets out for a much-needed break. It might be a little daunting, but the person you knew is still inside that malfunctioning body!
- Visit with the ALS patient even while the caregiver is home. Make them laugh. Talk. Read aloud.
- Offer to help and keep coming back. It just gets harder and harder for the family, and the support system gets smaller and smaller.
I hate this disease. A lot of people hate cancer, but at least they have an arsenal of drugs to fight with. ALS has nothing. Just time---will it be fast or slow? Who knows, but it will be a death sentence, and not a gentle one.
Have you been nominated or made a donation? Give your money, but give of yourself, too. :-)
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