WARNING: To some of you, this status has TL, DR written all over it; however, this has been weighing heavily on my heart lately so I really need to express it, and frankly some people on my friends list need to hear it. I know this has been a hot topic lately, but please just take a minute and hear what I have to say. Guys, we NEED to talk about a horrendous disease called ALS. Do you see this beautiful woman? Her name was Constance Lea Schwark. She was my grandmother. I have been told that my Grandma Connie was an angel on Earth, complete with a heart of gold, hazel eyes that were always sparkling, and a singing voice that was beyond compare. Ive been told that she loved life and always carried around a joy that would spread to everyone who knew her. Do you notice how Im saying Ive been told? Thats because I never met her. I never got the chance because ALS took her away from us before I was born. After her diagnosis, my family had no choice but to stand by and watch as this amazing, vibrant, healthy womans body turned against her, slowly paralyzing her from the legs up, and eventually killing her. The picture on the right is of Grandma Connie just two months before she died. This is what ALS turned her into. By the time this picture was taken, she could no longer talk or even hold her head up. But the worst part? All the while she was suffering her mind was COMPLETELY intact. She knew what was happening, but ALS made it so she could literally do nothing about it but wait for the end. She was trapped with no hope of escape. THIS IS WHAT YOU NEED TO KNOW ABOUT ALS: ALS is a death sentence that can strike anyone at any time. It knows no gender, race, or socioeconomic bounds. There is no therapy or treatment in the world that can help people who are diagnosed. The only thing that exists is a prescription medication that merely slows the progression of ALS, extending the patients life by only a few months when the life expectancy after being diagnosed is only 2-5 years as it is. People who are diagnosed are SLOWLY paralyzed. All motor function is lost--movement, speech, everything--and yet tragically, the disease keeps the brain alive, so the patient is completely aware of everything that is happening to them. It is a cruel, viscous illness that I wouldnt wish on my greatest enemy. HERES THE POINT: ALS has always been a tragically underfunded, under-researched, and underestimated cause; however, with sufficient funding, researchers actually have a chance to find a cure or at least some kind of therapy that would give those suffering from ALS and their families hope. Thats where the ALS Ice Bucket Challenge comes in. This fundraiser has existed for years, but its popularity this year has caused the ALS Association to raise $31.5 million. I COULD NOT BE HAPPIER ABOUT THIS. I dont give a crap about someone pouring ice water on their head, but anything that spreads awareness and encourages people to donate to this cause is a BLESSING. IF YOU ARE CALLED TO DO THE ICE BUCKET CHALLENGE, THIS IS WHAT YOU NEED TO KNOW: You have two options after being challenged-- either accept the challenge and pour a bucket of ice water on your head AND DONATE AN AMOUNT LOWER THAN $100 TO THE ALS ASSOCIATION, or decline the challenge and simply donate $100 to the ALS Association. This fundraiser is for the ALS Association only. If you would rather donate to a different cause, research that causes different fundraising opportunities. It is inappropriate to accept the Ice Bucket Challenge and donate to a different organization other than the ALS Association, just as it would be inappropriate for someone to do, say, Relay for Life but donate to a different cause. If you are interested in doing more for this cause than just dumping ice water on your head, please consider joining me and countless others in participating in the Walk to Defeat ALS that takes place October 11, 2014 in Scottsdale. You can bet I will be there to walk for my grandma. So many people have suffered from this disease, whether they got it themselves or had to watch a family member slowly die from it. It angers me that ALS took my grandma away. It angers me that I will never have a chance to meet her. It angers me that she literally suffered. And it angers me that even today nothing can be done about it. Please consider donating to the ALS Association and at least spread awareness about this disease because everything counts. NO ONE deserves the suffering that ALS causes, so I dont know about you, but I think its time we band together and strike out ALS forever. For more information or to donate, visit: alsa.org
Posted on: Fri, 22 Aug 2014 03:18:21 +0000
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