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.

Tuesday, February 14, 2012

Everything Is More Difficult With ALS...

...including clinical trials and bringing products through trials. This article is shining some much-needed light on ALS and the dilemma of a system that protects patients to death.


Monday, February 13, 2012

It's Amazing What You Can Learn When You Ask, "What Should I Ask?"

One of the first things that can benefit an ALS patient after diagnosis is searching for a clinical trial that may give a chance at a beneficial new treatment and will certainly give a feeling of purpose in the battle against a disease without a good treatment.

There is a website that gives patients a lot of excellent information in evaluating clinical trial choices -- www.alsconsortium.org . The website doesn't have a catchy URL and the organization that maintains it doesn't have a name that really matches the mission clearly, but it is the go-to place for ALS clinical trial information. There is a physician who is an ALS clinical trial expert who is available for telephone or email consultations at no charge to patients. If only the well-meaning relatives who search the internet for hope for their loved ones would find this site rather than the Chinese miracle cure sites!

There are clearly choices in clinical trials, and one might wonder what a neurologist or ALS researcher would choose personally if faced with ALS. Some trials are more "promising" than others and some drug candidates have been around the block before without a lot of success. How does a patient sift through the trials to find the best personal choice.

It would be really helpful of neurologists and ALS researchers would contribute to a list of things that they would ask before choosing a clinical trial. Surely there are things like whether one trial excludes you from others, whether there is a placebo group, whether there is financial assistance for travel, whether the drug candidate has been tried for ALS before, whether there are likely side effects, whether the trial can move forward quickly, etc.

Is there anyone in our ALS organizations who might interview some experts to assemble the really good questions that they would ask? We're talking about the insightful questions that they would ask if they or their loved ones were in the ALS dilemma. This list of questions would be a valuable resource for patients (and for well-meaning relatives).

Thursday, February 9, 2012

This Is My Dream World And Welcome To It

There are dozens of ALS multidisciplinary clinics throughout the United States. Each is branded as ALSA or MDA depending on the organization that provides standards and significant subsidies in its operation.

In my dream world, there would be a consistent message given by the neurologist to every patient and family on the first clinic visit --
  1. Go to www.cdc.gov/ALS and self-register in the ALS National Registry. That is the only way to insure that your case will be counted and that your clues will be retained for scientific research. We will help you.
  2. Find a physician doing clinical trials and participate in a clinical trial. The only thing the least bit "promising" would be experimental. We will help you.
Then this should be discussed on the second visit and the third until the patient and family have made an informed decision on each of these critical actions.


Saturday, February 4, 2012

Indy And The World Welcome Team Gleason!

http://www.wdsu.com/r/30374359/detail.html

Be sure to watch the video.

Be sure to watch for Steve Gleason on the Super Bowl pregame on NBC.

Super Bowl week has been outstanding in Indianapolis for many reasons. This is the perfect venue for Steve Gleason and a huge blast of ALS awareness. The world will be watching.

Wednesday, February 1, 2012

There Will Be Some Super Awareness on Sunday


http://www.alsa.org/news/archive/super-bowl-pre-game-show.html


Thanks to Steve Gleason and Peter King and all who will focus the eyes of millions on ALS on Sunday afternoon.

ALS affects NFL players (below) and firefighters and homemakers and teachers and soldiers and coaches and nurses and everyone. We must do more to stop it!

NFL ALS Roll Call
Steve Gleason
Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg
Kevin Turner
Bob Hohn