ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, May 14, 2015

Some Stream-of-Consciousness Thoughts From #ALSAdvocacyDay2015


In no particular order, I reflect on my short trip to Washington, DC, this week.

  • For the first time ever, I'm grateful for being held captive on a plane, waiting for a jetway.  My Senator across the aisle could not have been more gracious and concerned as we talked about ALS, drug approvals, and the FDA.  Thanks, USAirways.
  • The Rally for Faster Drug Approvals held by www.HopeNowForALS.org did not disappoint -- enlightening speeches, thoughtful PALS and CALS, good information on FDA and drug approvals.  It was hot, but the PALS, CALS there did not wilt.  And there were signs and cameras, and heads on the street turned.
  • A sign taught me that "We are the change that we have been waiting for." I love it.
  • The evil ALS continues to pick some remarkably talented individuals and families.
  • Double-blind, placebo-controlled trials don't need to be the "gold standard."  Shoot, the gold standard is no longer the "gold standard," a PhD economist with ALS explained.
  • You listen to the SGD, but you look at the PALS delivering a speech, and it's amazing.
  • Open and diverse discourse can teach us all new things, and God knows, we need new ideas.
  • The status quo is simply unacceptable.  Same old same old isn't good enough.
  • Denial of hugs is one of the big evils of ALS.
  • Bragging rights should not be an unspoken priority.
  • PALS, CALS are their stories and so much more. So much more.
  • The Abigail Alliance has a the most refreshing IRS Form 990 that I've ever read.
  • The ship's photographer can be annoying in a legislative meeting.
  • Advocacy is year-round work.  Many of us take that seriously. All the more reason to give advocates a heads-up when a HR number is changed and prior co-sponsors need to re-up on the new HR. 
  • Legislators are very frustrated with the FDA, too.
  • I love Hoosiers.
  • Dormant Therapies provision is important in 21st Century Cures, but there is a lot more than needs to be in there that will have a direct impact on getting therapies to PALS faster.  Is anyone looking out for PALS?  Really looking out?
  • We all don't have to agree.
  • What do those ALSA people who randomly morph into your legislative meetings really do?
  • Money doesn't buy a great advocacy experience.
  • A chance encounter with your other gracious Senator on Pennsylvania Avenue can cap off a good day of advocacy.  I'll always remember talking about 21st Century Cures with him directly across the street from where I held a sign at the Rally for Faster Drug Approvals a day earlier.
  • My favorite hashtag for the fight against ALS is #notquietly . 




1 comment:

  1. Sarepta.for DMD..watch video. http://tinyurl.com/krk4zwl

    Austin has been on drug 25 weeks. We saw undeniable benefit that shocked us both today



    https://www.facebook.com/DmdHero/posts/471462186348083

    https://twitter.com/jennmcnary/status/596636253795160065


    kid should not be able to do that...even the FDA should know that?

    ReplyDelete