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Richard

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@richardhasals

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  • Profile picture of Richard

    Richard replied to the topic Are you gearing up for ALS awareness month? in the forum ALS Awareness Month 1 month ago

    I get lots of emails from various ALS organizations about May being ALS awareness month.

     

    However, in the past, CNN and Fox news carry no stories about May being ALS awareness month.

     

    A greater effort needs to reach the non-ALS community about May being ALS awareness month.  How about these various ALS organizations putting together a…[Read more]

  • Profile picture of Richard

    Richard started the topic Preventative Care After Being Diagnosed With ALS in the forum Living With ALS 6 months, 2 weeks ago

    Preventative Care After Being Diagnosed With ALS

    After an ALS diagnosis, do people continue getting preventative care such as colonoscopies, mammograms, skin cancer screenings, cholesterol checks, blood pressure screenings, dental cleanings, etc.?

    I can see 3 reasons not to continue with preventative care:

    1 – the hassle getting to and from the…[Read more]

  • Profile picture of Richard

    Richard replied to the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 10 months, 2 weeks ago

    …and my opinions must differ from both yours and Dagmar’s opinions because my posts/replies don’t get posted or are deleted, with no explanation of why.

  • Profile picture of Richard

    Richard replied to the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 11 months, 3 weeks ago

    Perhaps all the ALS associates should find a soccer star who has/had ALS.  Since soccer has 3.5 billion fans and baseball only has 500 million fans.  Rather than referring to it as Lou Gehrig’s disease, refer it to a soccer player, then maybe that would bring ALS more attention.

     

    Rich

     

     

  • Profile picture of Richard

    Richard replied to the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 12 months ago

    Kathy, I agree with you 100 percent!  I knew nothing about ALS until I was diagnosed.  A greater effort in awareness is needed.

     

  • Profile picture of Richard

    Richard replied to the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 12 months ago

    However, it is pitiful that it took the Baseball profession 80 years to support ALS awareness in the name of Lou Gehrig.  June 2nd 2022 should be the 81st recognition, not the 2nd.

     

  • Profile picture of Richard

    Richard started the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 1 year ago

    After being diagnosed with ALS, does anyone else besides Lou Gehrig believe that they are the luckiest man on the face of the earth?

     

  • Profile picture of Richard

    Richard replied to the topic Rare Diseases – If Patents Were Greater Than 20 Years in the forum Research Topics 1 year ago

    Thanks for your input…very informative!

     

  • Profile picture of Richard

    Richard started the topic Rare Diseases – If Patents Were Greater Than 20 Years in the forum Research Topics 1 year ago

    A U.S. patent, is generally granted for 20 years from the date the patent application is filed.

     

    Does anyone believe that for rare diseases, if patents were greater than 20 years, more research companies would participate in finding a cure for ALS?

     

    Rich

     

  • Profile picture of Richard

    Richard replied to the topic What does Advocacy and Awareness mean to you? in the forum ALS Awareness and Advocacy 1 year, 3 months ago

    Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 31 2021.

     

    Very disappointing results!

     

    No major news outlets were listed in the first 5 search result pages.  Just a lot of local outlets. Absent are CNN, NBC, ABC, CBS, OANN, Fox, Newsmax and all the major newspaper’s webs…[Read more]

  • Profile picture of Richard

    Richard replied to the topic Can anyone give advice in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 4 months ago

    I have general information about an ALS diagnosis…

    Just a few thoughts about the post ALS diagnosis and working with your physician or ALS clinic:

    1. Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
    2. Be provided an ALS primer. ALS introduction paperwork…[Read more]

  • Profile picture of Richard

    Richard started the topic Top 10 ALS Stories of 2020 – What Do You Think? in the forum Research Topics 1 year, 4 months ago

    Top 10 ALS Stories of 2020 – (Read Here: https://alsnewstoday.com/news-posts/2022/01/03/top-10-als-stories-of-2020/)

    What do you think? Did you read them? Do they indicate progress or stagnation?
    Bottom line, did any of the top stories of 2020 extend the life of any pALS in 2021?  The slow pace of research is disheartening to me.

     

    In…[Read more]

    • Profile picture of Amanda
      Amanda replied 1 year, 4 months ago

      I sure hope not!! I’ve seen progress in the research and clinical trials and hopefully there will continue to be progress in 2022. Progress does not always come in the form of a cure, although that is the desired end result as we all know; however, there are smaller advances along the way that will lead to a cure. There is so much to…[Read more]

  • Profile picture of Richard

    Richard replied to the topic In the Media in the forum ALS In The Media 1 year, 5 months ago

    NJGuy, I agree with you when you say: “trials take their own pace.”

     

    Here is an example: On December 24 2021, there was this news story that said the following:

     

    “Japan’s Yamagata University said Friday it has found that a drug being developed for the treatment of Alzheimer’s is also effective in treating amyotrophic lateral sclerosis, more…[Read more]

  • Profile picture of Richard

    Richard replied to the topic In the Media in the forum ALS In The Media 1 year, 5 months ago

    Never!

    The ALS associations responsible for getting-the-word-out about ALS are failing.

     

    Richard

     

  • Profile picture of Richard

    Richard replied to the topic Learn About Your ALS Progression – The Precision Medicine Program (PMP) in the forum Research Topics 1 year, 5 months ago

    Hi Azizullah,

     

    This website may have the information you need about participation:

    https://www.als.net/pmp-enroll/

     

    Richard

     

  • Profile picture of Richard

    Richard started the topic Learn About Your ALS Progression – The Precision Medicine Program (PMP) in the forum Research Topics 1 year, 5 months ago

    Learn About Your ALS Disease Progression – The Precision Medicine Program (PMP)

     

    The ALS Therapy Development Institute (ALS TDI) is offering a Precision Medicine Program (PMP) tool. The PMP is a free tool that can help you monitor your disease progression and see if ANY type of intervention is having an impact.

     

    The PMP gives you…[Read more]

  • Profile picture of Richard

    Richard replied to the topic Disease Progression in the forum Living With ALS 1 year, 6 months ago

    Hi Maya,

     

    Here is a brief video from Dr. Bedlack on ALS disease progression:

     

    See other short informative ALS videos at this location:

    https://www.youtube.com/c/YourALSGuide

     

    Richard

     

  • Profile picture of Richard

    Richard started the topic Giving Tuesday – November 30 2021 in the forum ALS Awareness and Advocacy 1 year, 6 months ago

    Hi All,

    On <u>November 30th</u>, individuals around the world will join together for #GivingTuesday, a global day of giving and unity, to use the power of generosity to connect and heal.

    Programs and services to support families affected by ALS are broadly and urgently needed. The physical, financial and emotional burden faced by individuals…[Read more]

  • Profile picture of Richard

    Richard replied to the topic Can anyone give advise in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    Hi Carol,

     

    My pleasure 😊

     

    One more thing…When trying to find the latest ALS treatment news, Google searching on ALS treatments can return an uncountable number of results.  A lot of the returned results can be years or even decades old, basically useless information.  In order to see the latest and greatest ALS treatment news you can try one…[Read more]

  • Profile picture of Richard

    Richard replied to the topic Can anyone give advise in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    Hi Carol,

     

    My first symptom was right hand weakness in November 2019 and I was officially diagnosed with ALS in September 2020. Currently has spread to the right arm and left hand and arm.

     

    My ALS ”support team” gave me no guidance or reference points. They basically just said that I have ALS and sent me on my way. So, for rec…[Read more]

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