So our older sister Melissa Garcia DeLeon nominated us to do the #ALSIceBucketChallenge - in true Garcia fashion, were late, but were doing it and donating to the cause. Most of you know me and our story with Braxtons diagnostic journey, so you know Im all about anything that helps to raise awareness of rare diseases. A lot of people think that this is lame, pointless, not helping, wasting water, blah, blah, blah, BUT did you know anything about ALS before these challenges were posted? Would you have read anything about ALS if people just posted a bunch of facts? The answer is probably no on both fronts...the Ice Bucket Challenge has been HUGELY successful in raising awareness for a disease that only a few people, outside of those whose lives are directly affected, knew anything about. Much like those who have gone down the Undiagnosed path. No one knows what life is like for us and it would be a DREAM for the Undiagnosed and Rare or Rubinstein-Taybi Syndrome community to have the conversation that ALS currently has. I really like what my friend Kailee Johnson (who I challenged) recently said about being Undiagnosed, being Undiagnosed is like finding out you (or your child!) have Cancer, but there is no cure, no funding for research, no support group. Today, that is unheard of and unacceptable, but for the Undiagnosed world, that is the reality. The no cure and no funding is also applicable to those diagnosed with ALS. There are no cures or medications without money and this challenge has served its purpose of starting conversations about an otherwise unknown disease and raising money to do something about it. So, sorry, Im not sorry for yet another ALS Ice Bucket Challenge...I hope that you will visit alsa.org to learn more about ALS and make a donation!! Kristen McCommas I challenged you, too! :) [P.S. there really was ice in those buckets, but this is Texas and it melted in the time it took us to get everything ready!]
Posted on: Sat, 23 Aug 2014 02:40:21 +0000
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