What is ALS?

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  • Опубліковано 3 сер 2024
  • What is ALS?
    ALS, Amyotrophic Lateral Sclerosis, is a progressive neurodegenerative disease that causes your brain and spinal cord to stop transmitting signals to your muscles, resulting in gradual failure of all muscles.
    You become increasingly less capable of autonomous movement, talking, eating and drinking. Usually, people with ALS die because the respiratory muscles stop working.
    Around 1500 people suffer from ALS in the Netherlands. Each year, approximately 500 new patients are diagnosed, while 500 people die from this disease. Little is known about the cause of ALS and there is no remedy yet.
    So - with an average life expectancy of 3-5 years after diagnosis - there's no hope for a future yet. There's just one way to get rid of ALS: scientific research toward finding a cause and a treatment.
    Since we still know so little about the origin of the disease, virtually everything is included in the research: from environmental factors to the role of diet and DNA.
    This is a costly exercise without permanent support or grants from the government. And that's why the Dutch ALS Foundation (Stichting ALS Nederland) is so important.
    Together with the ALS Centre at the University Medical Centre in Utrecht, they make the research possible.
    The foundation funds the majority of this research from donations, while Dr Leonard van den Berg and his team focus on the mysterious origin of ALS.
    Because the development of a medicine or therapy can only start once this is clear.
    In addition, the foundation focuses on the quality of life and care for ALS patients and their families.
    Since basic daily routines become harder as the nerve cells in your brain and spinal cord are affected.
    Ultimately, you can no longer burden your friends and family with this. It's far too stressful.
    In recent years, the awareness of ALS has increased considerably.
    Through our campaigns where deceased ALS patients play a leading role and through great initiatives such as the Amsterdam City Swim, Tour du ALS and of course the Ice Bucket Challenge, ALS is now well known.
    The next goal is wiping out ALS altogether.
    You, too, can make a difference as a contributor or by initiating a fund-raising event for the ALS Foundation.
    JOIN OUR FIGHT AGAINST A MERCILESS DISEASE

КОМЕНТАРІ • 39

  • @claraurias1441
    @claraurias1441 6 років тому +14

    An acquaintance of mine just died from ALS. "... you can no longer burden your friends and family with this." What an insensitive comment to make for an organization that tries to find a cure for ALS. This comment throws compassion out the window and robes the patient from her/his intrinsic value as a human being turning her/him in an unbearable burden.

  • @benjaminsteffen-nielsen522
    @benjaminsteffen-nielsen522 6 років тому +7

    2:00 : "ultimately you can no longer burden your friends and family with this" - This statement seems very definitive given the comlexity and variability in people's lives. Isn't this question ultimately something that should be left for people themselves to figure out?

  • @neelbeatbox280
    @neelbeatbox280 6 років тому +1

    Wish Jason Becker heals

  • @nostalgiaride195
    @nostalgiaride195 4 роки тому

    My father have the same disease ...and there is nothing we can do for him :(

  • @CJVP99
    @CJVP99 6 років тому +5

    wait if the average life expectance is 3-4 years how is Stephen Hawking still alive?

  • @natashageorge9166
    @natashageorge9166 6 років тому +5

    Why is Stephen Hawking not mentioned in this video

  • @HI-ly8sf
    @HI-ly8sf 6 років тому +3

    Stephen hawking has lived so Long with ALS what about that?

  • @aaronshi270
    @aaronshi270 6 років тому +1

    dat copic tho