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.

Wednesday, September 28, 2011

Tuesday, September 27, 2011

Are The Right Agencies Doing The Right Things?

A perspective on some of the proposed "enhancements" to the CDC's ATSDR ALS Registry...

http://alsspreadtheword.blogspot.com/2011/09/whoa-government-is-moving-too-fast.html

It's troubling to see such expensive "feature-itis" growing from a project that needs to be focused on a successful core mission.

Sunday, September 25, 2011

NFL ALS Roll Call Grows - September, 2011 Edition

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

There are thousands more who have played college football.

This mystery needs to be solved!

p.s. If anyone knows of other NFL players who have been stricken with ALS, please let me know. Thanks.

He Continues To Wow Us

Five years ago Steve Gleason wowed his city and a world of football fans with a blocked punt. Today he wows everyone involved in the fight against ALS with his attitude and courage.

Dan Dierdorf broke the news on the CBS pregame show, and he was visibly moved.


The troubling list of NFL players with ALS grows. In the meantime, we watch Steve Gleason make some remarkable good come from the rotten cards he was dealt.

Friday, September 16, 2011

When Dealing With ALS, It Pays To Read Things Twice

When I read Tuesdays With Morrie, I found warm messages on values and life. When I read it a second time, I found wisdom that I didn't see the first time. I saw a wise man's path through the ALS journey.

Yesterday there was a beautiful, short biographical piece on Lou Gehrig written by Reinhardt Krause in Investor's Business Daily --


The first reading reminded me of much that I knew about the remarkable Lou Gehrig. The second reading turned on some lights in my mind on how much Lou Gehrig's life teaches us personally on winning and achieving greatness. The fight against ALS has not yet been won, and "greatness" is not a concept would be associated with our teams fighting ALS today.

Please read the article. If you are involved in the fight against ALS, please read the article twice. The self-help is right under our noses.

Sunday, September 11, 2011

We Remember

As we remember the all of the heroes lost ten years ago today, here is a piece that speaks volumes about the American spirit --

HETRICK: Ten years after 9/11, keep doing what you do | 2011-09-10 | Indianapolis Business Journal | IBJ.com

May we achieve the national greatness that we saw in so many individuals ten years ago today. May that greatness include finding a treatment for ALS. We have lost over 60,000 Americans to ALS in the last decade, many of whom served bravely defending our country (and were never counted in our casualties of war) or served us all in public safety roles.

Saturday, September 10, 2011

Will People With ALS Get The FDA They Need From This?

Here is some reading about the FDA's latest PDUFA reauthorization proposal. If you're not familiar with PDUFA, google and enjoy the trip on how we have chosen to fund and improve the FDA over the past decades. Here is some overview information on the PDUFA V Technical Agreement.

Below are some organizational perspectives.

National Health Council Announcement

The National Health Council applauds the FDA for agreeing to include in its recommendations three proposals championed by patients: the development of an objective, qualitative benefit-risk framework that includes robust patient input; the advancement of new therapies through the expanded use of biomarkers and patient-reported outcomes in clinical trials; and the creation of regulatory policy, procedures, and guidance to encourage the development of treatments for rare diseases.

All three of these components are necessary for advancing access to desperately needed treatments and cures. To exclude any one of these elements would be to offer a reauthorization package that would not meet the needs of patients – particularly those with few or no treatment options.

ALSA Announcement

Since July 2010, The ALS Association participated in monthly meetings with FDA officials to bring the perspective of people with ALS to the discussion on the reauthorization of PDUFA. Three key provisions advocated by The Association were included in the proposed agreement. They include:

•Developing Treatments for Rare Diseases: Directs FDA to issue regulatory policies and guidance that encourage the development of drugs to treat rare diseases and to include patients as active participants in this process.
•Assessing Risk-Benefit: Instructs the agency to develop an objective and qualitative framework for assessing risk and benefit during the drug review process and to ensure patient involvement. The provision takes into account the fact that people with ALS who have no treatment options and who will die in just two to five years have a much different view of risk and benefit than does someone with a treatable or chronic condition.
•Utilizing Biomarkers in Clinical Trials: The proposal encourages greater use of biomarkers and other markers, or “sign-posts,” to help determine risk and benefit when reviewing new drugs. Biomarkers have the potential to significantly accelerate access to new drugs by helping to determine much sooner whether a treatment works and in which patients.

Comments From A Pharmaceutical Industry Representative

PDUFA is only part of larger FDA reforms needed to improve public health.


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It's not a done deal. There are aspects that are a matter of life and death for people with ALS who are currently without an effective treatment and without a biomarker. It's important that we all pay attention as this proposal moves forward. Mission has not been accomplished.

Also, for ALS, a disease without biomarkers, are we going to slow down trials that might be mixing biomarker theories with efficacy theories? Sure, it would be great to use proven biomarkers in efficacy trials, but ...

Thursday, September 8, 2011

Here Are Some Words On Health Activism

...from a health activist.





It's terrible that ALS has drafted another, but we're glad for Barbara Brenner's perspective. The fight is perhaps changing for the better very soon.

The plot definitely thickens.

...and Ron Leuty continues to pay attention to how the course of a disease may be changed thanks to enabling technologies...

Saturday, September 3, 2011

Patients Are Changing The Same Old Same Old

Organizations are joining the conversation.

Many thanks to Ron Leuty of the San Francisco Business Times for an interesting piece of journalism on patients taking the lead in clinical trial enrollment. Very seldom have we seen so many important perspectives reflected in one article related to ALS.


It's definitely worth your time to read!

ALS often steals a person's ability to speak. These patients will not let it silence their voices.