Kevin's on the news! (UPDATED)

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May is ALS awareness month.  As such, a few folks from the Facebook ALS group who are local to the area engaged local media about the struggle to acquire access to experimental treatments.  One member in particular, Patricia (or Patty) tweeted Sheree Paolello incessantly until Sheree set up an interview with Patty and her kids.  Patty got a few others involved to help tell the story of how the FDA and congress has let down the ALS community.  The following links to the story that aired on the six o-clock news:

https://www.wlwt.com/article/als-patients-fight-for-more-trials-as-there-s-few-drugs-available-to-treat-deadly-disease/36562722

UPDATE:

For a continuation of the story, including a full transcript and raw footage, use this link:

https://www.wlwt.com/article/dying-waiting-als-patients-fight-for-more-trials-as-theres-few-drugs-available-to-treat-deadly-disease/36563451

If you would like to help us battle, you can contact your congressmen here:

https://iamals.org/action/act-for-als/

Comments

  1. JMansfieldMay 28, 2021 at 7:28 PM

    So good to see and hear you on video! Now I am intrigued about what type of work you did. You spoke so eloquently about this journey. I think collectively the frustration about the lack of treatments came through with all those interviewed. That last link made it super easy to contact Congress. Thank you for including it in this post. Please know you are not forgotten.

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