I fear I must go on a mini-rant. I’m not sure if I’m ranting about Facebook or the ALS Ice Bucket Challenge videos that I am seeing daily.
At first, I was able to ignore the videos being posted for the ALS Ice Bucket Challenge. Why? Because people were posting celebrities throwing ice water on their heads and there was no mention in the video titles of why they were doing this. I just figured it was some gimmicky thing someone had come up with because they were celebrities, and not a fund raiser.
Then I saw some young people (under 25) posting videos of themselves stepping up to the challenge and tagging their friends to do the same. So I had to find out what, exactly, the challenge was.
I’m pretty sure the young people who were doing this did it because it was cute and fun, and, of course, to avoid the “penalty” of having to donate $100 to ALS (also known as Lou Gehrig’s Disease) if they didn’t take the “plunge” and dump ice water on their heads.
Let me be very clear: I am NOT against anyone donating money for research into this horrible rare disease. I know several people who have known someone with ALS, so I’m sure it is personal to many people who have had friends or relatives with ALS. I am glad they have raised so much money as a result of this challenge. (It’s in the millions of dollars, now.) I am also NOT against anyone raising awareness about any disease. Hopefully, they will inspire someone to give money or just look around a pay attention to people around them who may be suffering from some rare, or even common, disease or disorder.
However, I’d like for people to know that there are, according the National Organization for Rare Disorders (NORD) between 6,000 and 7,000 rare diseases and disorders that affect nearly 30,000,000 Americans. About 50% of them affect children. Very few of these rare diseases are named after celebrities or sports stars, so you probably have never heard of those nameless thousands of rare diseases that are not associated with a famous adult who developed a rare disease in their adulthood, after they had become famous. I daresay that the millions of children who are born with rare diseases probably won’t have the opportunity to grow up and become famous, and as a result, have their disease named after them.
I would like for people to look around them and pay attention. Do you want to give money to the ALS Association? Then please do. But look around you. There are people with rare and even not so rare disorders and diseases all around you! How about that friend whose parent has Alzheimer’s? How about that neighbor whose child has cerebral palsy? Give some money to the organizations that support them. Better yet, offer to support them in some tangible way. Let them know you’re thinking about them. Take them a meal. There are lots of families who have beloved members that require extra care, because they were born with or have acquired a disease or disorder. I have a friend with a chromosomal blood disorder that is even more rare than XLH, and it has some long complicated name that isn’t a celebrity’s name and doesn’t even have a catchy acronym. No one’s started a fundraiser to raise awareness of her disease or even teach people how to pronounce it. As I mentioned, there are over 30 MILLION people in this country with a rare disease. You likely know one of them. They also need your support.
Sure, if you also want to post a cute selfie of ice water being dumped on your head, then have at it. But can you not find something better to do with your time? Like writing TWO checks, instead of one. One to the ALS Association and the other to some other support organization that goes towards research into a cure or a treatment for people with another disease. And, as always, try to find out what percentage of your donation actually goes the cause you want to support. The higher the percentage, the better.
Of course, I am partial to the XLH Network (www.xlhnetwork.org) for donations. They are trying hard to raise awareness with the medical community about our disease. If you have XLH, then you likely know what it feels like to tell your new doctor or dentist that you have XLH and to hear that doctor or dentist respond, “Huh?”
And now you can tell them, “You know, that bone disease that the famous blogger, Banjogrrl, has.”
Copyright S.G. Hunter and Banjogrrldiaries, 2014.