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.

Wednesday, August 5, 2015

Let Me In, Whee-Ooh

"Let Me In"
The Sensations - 1962
Let me in whee-ooh (whee-ooh, whee-ooh, hoop-whee-ooh) 
(Whee-ooh, whee-ooh, hoo-ooh-oop-whee-ooh, whee-ooh) 

I can see the dancin' (let me in) 
The silhouettes on the shade 
I hear the music (music), all the lovers on parade 
Open up (let me in), I wanna come in again 
I thought you were my friend 

The big ALS symposium is coming up in December.  Already we're seeing news of abstracts accepted and discoveries that will be presented.

The registration fee of approximately $600 goes up even more after August 19.

There are people with ALS and their loved ones who are interested in good science.  They spend countless hours searching.  A gentleman I knew with ALS attended the symposium in 2010 and found an interesting drug candidate and enrolled in the clinical trial as soon as it was available.

Why would we not want people with ALS or their loved ones at such a symposium?

Why would there be so many barriers between PALS and this festival of information about good science?

The fee without any consideration for people with ALS and caregivers is one of the big barriers.

The lack of welcoming information for those who aren't insiders is another.

The spirit and letter of the Patients Included movement needs to be in the fabric of every ALS meeting, especially the premier scientific symposium.  It's past time for this meeting to be physically and virtually accessible to every PALS or loved one who is interested.

1 comment:

  1. It should be a "no brainer" that the event should be live streamed. I've been before, listened to the pontificating, one-ups-manship, and the statements that "this may be a target or drug for ALS" and this game-changer "Might be significant". If PALS are allowed into the event and can participate during the Q & A, maybe a conversation can emerge. Two words that continue to resonate in my head are "Urgency" and "Access". With PALS present via livestream, maybe attention will be applied to those two words.