Red tape campaign for ALS

Leaders who are effective in the ALS landscape (Brian Wallach, Mike Henson, Michelle Lorenz, to name a few) are uniting and have created the Red Tape campaign. If successful, the campaign could finally get working drugs in bodies and possibly save Pat’s life.

The Red Tape campaign’s main goal is to get congressional hearings to hold the FDA accountable for its recent uninformed (or corrupt? we don’t know) decisions on NurOwn and AMX00035.

Please take a minute to join the red tape campaign… it’s free and easy! You can even be creative and artistic with how you capture being killed by red tape! All you need to do is take a picture of yourself with red tape over your mouth with your eyes closed and post it to social media @mentioning your house rep and senators and some other key players like @SecBecerra @PattyMurray @SenatorBurr @FrankPallone @RepAnnaEshoo @cathymcmorris @brettguthrie (those are Twitter handles but you can find the equivalent on Instagram, TikTok, etc.) For example, below is my Twitter tweet.

You can download this PDF for a pre-made sign to hold (page 1 of PDF) and an image of red tape with the word “dead” printed on it (page 2 of PDF).

Be sure to include the #ALShearing hashtag and #nomoredead hashtag. Be sure to change your profile picture to the same red tape picture during the month of May, ALS Awareness Month.

For details, watch the NME video at

If you’re not sure who your congresspeople are, another quick way to participate is to fill out this I AM ALS form, which also gives you the name of your congresspeople.

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