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Knowledge is Power: Know ALS #WhatWouldYouGive #EndALS

ALS is a disease that ends the way one lives, eventually completely ending life.  There has to be a way to cure it or at the very least treat the symptoms.  Medical companies make so much money and they seem absolutely greedy.  Part of me hates them for their greed. I understand that they need to pay for their research but I think that their profit margins outweigh what they should.  It is my opinion, and probably the opinion of the general public, that research should not be so expensive that companies just stop researching things if it seems that if it doesn’t make a profit or one large enough for their company.

When I heard about the ALS Institute I was curious about two things:

1 What exactly is ALS?

2. Is this a company who is profit-driven, truly care more about finding a cure and treatment for the disease or simply about the bottom dollar?

I understand that it costs money to do these things, I don’t feel that people should get rich off of doing what seems like it should be a common courtesy of their skillset. I hate that the world is so money driven people don’t even bother to do things unless it makes them money.  Medicines and treatments should be affordable and not hard to access.

According to Wikipedia ALS is

Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) and Lou Gehrig’s disease, is a specific disease that causes the death of neurons which control voluntary muscles.

About the Institute

(from their site)

The ALS Therapy Development Institute is our Cambridge, MA-based laboratory space, 100% dedicated to innovative ALS research. It is funded by our global community.


I personally have issues with muscle weakness (I have cataplexy) and I know exactly how debilitating it can be.  One who wants to be active can no longer do so when they want to do so.  When one loses complete control of the one thing we should be able to control (our body movement), it is absolutely devastating.  Since I know how this feels to an extent, it broke my heart to read about the disease.  I seriously wanted to curl up and cry.
I am posting this solely for educational purposes, for knowledge, because we all need to know about things and to be educated as the famous quote goes: knowledge is power I challenge you to not only research the disease but to share and help make awareness more common a health issue one cannot control should not dictate how they are treated in public by their families or anyone else I can say from experience but that is one of the worst parts of having a disease although people may be well-meaning they treat you different even though in your mind you are the same person you was were before the disease took over your life.  My experience of that very thing sent me into a deep depression.  It was terrible.  I can only imagine how those with ALS feel.  Let’s do all we can to help find a cure.

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Hi all! My name is Kaycee. I am now learning to navigate life as a single woman. Turns out, it's not all about husband and children. Who knew? So, I'm on a journey of self discovery. I have 5 children, 3 of which are married, 5 2 are in Heaven (my beautiful baby Acadia Reign and my Diva Princess Tara Elizabeth), and 7 grandchildren! Plus, a ton of fabulous nieces and nephews! My educational background is in Psychology and Child Development but my heart is in ministry, crafts, fun, reviews and my website, My Crafty Zoo. Or at least it was, now I'm learning who I really am, beneath all of the busy family life. It's an adventure to be sure. I look forward to continuing to share my life through word and pictures with you and love hearing your feedback! Thank you for taking the time to read and allowing me to share! I look forward to reading your comments!

One thought on “Knowledge is Power: Know ALS #WhatWouldYouGive #EndALS

  • Linda Manns Linneman

    This is such an aweful illness. I am a nurse and have taken care of many patients with this. I totally agree with you about these companies being in for it for the money. There are other countries who sell medication so much cheaper. I believe that so many in the United States are out to make as much as they can from people that can’t really afford it. Our medical system is so unreasonable. I keep praying daily for improvement. More love, caring, empathy, etc for the people. Thank you so much for sharing this great article


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