Please contact your reps by Jan. 30

Dear friends and family,

I have an update on my last ask AND another ask (greedy! but I truly believe this could save Pat’s life).

You may recall or even helped with my last ask of contacting your congressman asking them to sign a letter from Mike Coffman, which had 3 asks.

Well 11 or so congressman signed the letter and 40+ voiced their support for it (effectively signing it). Then Mike Coffman was voted out of office. So while there’s no longer “a Mike Coffman letter” to sign, the asks remain nearly the same and besides, it’s not about the letter. It’s about educating the congressman about how behind ALS research and funding is and about finding out if the congressmen is with us or not in getting our modest requests fulfilled.

Although my ask today is similar to my last one, there are some differences. So here’s what I’d like you to do now, and I wouldn’t be asking if I didn’t think this could save Pat:

  • If you’ve already contacted your 3 congressman (House Rep and 2 Senators) or their health aides per my last ask and they’ve gotten back to you, please let me know what each said. If they didn’t get back to you or said no, please call them before Jan. 30 and:
    • Remind them of the 3 asks (below) and ask if they will support them and help you/I AM ALS make them happen. If they say yes, let me know and you’re done! If not:
      • Ask why, record their answer (to send to me).
      • Ask if the congressmen will please meet with Sandy Morris or Cathy Collet on Feb. 13 in DC to discuss these asks. Tell the congressman that Sandy and Cathy are representing you, their constituent. The congressman can set up a time to meet Feb. 13 by contacting them directly at Sandy Morris, sandymorris333@gmail.com, 530-448-1622, or Cathy Collet collet.mc@gmail.com
      • Ask them to drop by the More Than Our Stories event in DC Feb. 12.
      • If they cannot commit to Feb. 12 or 13, ask them to contact Sandy or Cathy directly to discuss (so they can better see our side and we can better see theirs).
    • If you haven’t contacted your 3 congressman, please call them before Jan. 30 and ask if they’re familiar with the three asks (below). If they don’t want to support the asks, go through the above four bullets. If they’re unfamiliar with the asks, tell them what they are, then ask if they could please meet with Sandy and Cathy per above (or if not, could they call them to discuss).
    • In any case, let me know who you’ve contacted so I can give YOUR name as constituent names to Sandy and Cathy. They will reach out and try to set up a meeting with your congressmen.

The 3 asks

  • ALS patients want access to experimental drugs until a treatment or cure is found. We don’t care if it’s through RTT, Extended Access, clinical trials, or what mechanism.
  • We want the same/similar FDA guidance document that other diseases have. We want wording like “RTT and EAP does not affect drug companies’ trials or put them in a liable position.” We want more humane clinical trials like oncology has (limited placebo usage, if on placebo then you can get the real drug right after trial, and you can get access to the treatment after the trial if it’s working for you).
  • We want a single point of contact at the FDA who can work with I AM ALS (and other ALS groups) moving forward.

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