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    • #22074
      Amanda
      Keymaster

      Most people have probably heard the news that John Driskell Hopkins, a founding member of the Zac Brown Band, was recently diagnosed with ALS. He has also started a foundation, Hop on a Cure! It’s a shame that oftentimes it takes a famous person to be diagnosed with a rare disease in order for the disease to get more attention and funding.
      Have you heard of Hop on a Cure foundation? Do you think that having a person in the entertainment industry or in the public eye will help raise money and awareness for ALS?

      • This topic was modified 2 months ago by Amanda.
      • This topic was modified 1 month, 4 weeks ago by Amanda.
    • #22092
      Dagmar Munn
      Keymaster

      I haven’t heard of the Hop on a Cure foundation (but now I know!) and I’m late to the game knowing anything about the Zak Brown Band (OK, so I don’t listen to country/western that much) but… I am sorry to learn that John has ALS. And yes, every little bit helps when it comes to raising awareness about ALS. Having a person in the public eye certainly helps garner attention. I’m grateful he has started this foundation.

    • #22097
      Kathleen B (Katie)
      Participant

      Well, I am totally familiar with the Zac Brown Band (have some albums…and playlist songs now)…but I don’t ‘follow’ the people involved any longer, nor am I on social media to see this kind of news, so I missed the ALS diagnosis and Hop on a Cure foundation.  Until seeing it today (6/6/22).  I do not know yet if it will help with awareness & fundraising– but  I do know that Michael J. Fox has certainly been a celebrity to raise awareness about Parkinson’s Disease & garner research funding.  Since this, is in many ways, also considered a neurodegenerative disease–as it seems so is muscular dystrophy–where is the connection between the sciences for these?  How can they be ‘tied together’ in a package of awareness information when it comes to the public?  Are they all considered ‘rare diseases’, or just ALS?  I do have so much to learn–and limited time to spend focusing on such things–but I don’t see much changing soon if there is not some greater collaborative & cooperative effort of multiple disciplines involved.  Please understand, I am not being negative, I am just having a hard time wrapping my head around the lack of possibilities that are hopeful for maintaining some sense of ‘normal’ in living with ALS…at least at this point of 2 1/2 years into diagnosis with moderate-fast progression of limb/lumbar onset sporadic ALS.

    • #22101
      Creighton Rider
      Participant

      …make that John Driskell Hopkins, aka  “Hop”

      • #22115
        Amanda
        Keymaster

        Thank you Crieghton! You are absolutely correct and I edited my post. 🙂

    • #22124
      Peter
      Participant

      Hello, for many people affected by ALS it is not easy at the beginning to address the large audience. If someone finds the courage and strength to do so, should it be supported. In this days, it is unfortunately the case that you have to be loud in communication in order to be heard. If someone already has a large base of listeners, the volume can be turned down accordingly or one reaches more. I am urgently looking for people who can spread #steps4ALS in their network to raise awareness for ALS and raise funds for research. John would be a perfect person to do so.

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