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, August 30, 2011

People With ALS Deserve A Little Good News!

...and they got some really good news tonight.


http://www.bizjournals.com/sanfrancisco/blog/biotech/2011/08/neuraltus-als-lou-gehrig.html?s=print

By Ron Leuty in the San Francisco Business Times

Neuraltus ALS drug wins FDA orphan and fast-track status!

Now to fill the few remaining seats in the trial so that we can see how fast the fast-track is.

Hot Off The Press - ALS Registry Annual Meeting Summary


The meeting notes from the 2010 annual ALS Registry meeting were put on the CDC's website last week, over nine months after the meeting.


We believe that the 2011 meeting may be happening this week. We hope that it doesn't again take almost a year to see the summary of the proceedings. People with ALS don't have that kind of time to wait!

Monday, August 29, 2011

Lights, Camera, Action To Defeat ALS

It's that time of year again for entries in the American Academy of Neurology 2012 Neuro Film Festival

http://www.aan.com/press/index.cfm?fuseaction=release.view&release=978

http://patients.aan.com/go/about/neurofilmfestival

Please spread the word. This is a great opportunity to raise some critical ALS awareness and have a little fun, too.

Friday, August 26, 2011

If You Were Recently Diagnosed With ALS, Your Best Friend May Be alstrials@partners.org



You need to get to a neurologist doing clinical trials because anything the
least bit "promising" would be experimental.


Jose Biller, M.D. upon diagnosing a patient with ALS in 1996


That was guidance that unfortunately not every patient hears on the day of diagnosis. It is important because every patient deserves the opportunity to make informed decisions regarding options to fight the incurable disease and to contribute to the knowledge of that disease for future patients. Those informed decisions cannot be made after the window of clinical-trial eligibility has slammed shut, and in the case of ALS, many patients are not even diagnosed until much of their eligibility window has passed. After 24 to 36 months after first symptoms, even if you're lucky enough to still be alive and kicking, most clinical trials won't accept you.

People with ALS get spotty information from their neurologists regarding clinical trial opportunities. Some are actually discouraged because a trial might have bad side effects. Some docs don't mention trials outside of their own institutions. Others don't mention clinical trials at their institutions. This is nuts. People with ALS are perfectly capable of making their own medical decisions. Having information is a critical part of making medical decisions. Withholding information does not help.

There is a well-kept secret that can be of immense help to patients and families who would like to make their own informed decisions. There is a clinical trial expert available via email at alstrials@partners.org or via phone at (877) 458-0631 Monday through Friday, 9 a.m. - 5 p.m. eastern time. This person is a physician and is knowledgeable on all ALS clinical trial possibilities. The position is funded by ALSA and NEALS (an ALS clinical trial incubator) and is a source for objective information to assist patients in their decisions.


Last week a message board told of a patient who was pursuing a clinical trial that was filling fast. She could not get a response from the investigator's email contact at clinicaltrials.gov. She contacted the clinical trial expert and got some action. That's progress!


Thursday, August 25, 2011

Show Some Compassion


If You Can Cure ALS, Then You Can Cure _____________ (Fill In The Blank)

The headline on the following article may seem ironic:

"Cause of ALS is Found, Brings Hope for a Cure for Alzheimer's Disease"


My first reaction was, "Well, what about hope for a cure for ALS?" ... then I read the article.

Moving Pictures, Inc. (MPI) has doubled the percentage of their profits that they donate to Alzheimer's and dementia research, excited by the recent scientific breakthrough from Northwestern University. A new University study published in Nature identifying evidence of a common cause in all forms of amyotrophic lateral sclerosis (ALS, better known as Lou Gehrig's disease), a neurodegenerative disease causing fatal paralysis, opens a door to a cure for a disease that has long stumped scientists.

True scientific breakthroughs that address ALS have been few and far between. It is acknowledged as a nettlesome, complex neurological challenge. Many feel that if you can solve the ALS problem, then you can solve a lot of neurological problems. This article was a testament to that theory.

It's wonderful that the wave of scientific ALS interest in the last week is leading to related scientific excitement for Alzheimer's and Parkinson's and other neurological conditions. Perhaps if we can unravel ALS to its common denominators then we can unravel a lot of other diseases that will make new drug development for ALS an attractive proposition.

Let's hope that companies like Neuraltus and Biogen Idec can bring their current "promising" ALS clinical trials to successful conclusions quickly so that possible therapies for ALS can be evaluated and delivered... then perhaps, they can leverage ALS success into success in other much larger patient groups. After all, if you can cure (or even treat) ALS, then you can cure ______.


Here Is A Nice Honor And Awareness-Raiser

Paul Wicks is indeed an innovator, and it's nice for people who read an MIT publication to see his work in the context of ALS.


In a time when ALS clinical trials finally may actually be doing something, the role of PatientsLikeMe will be interesting.

Tuesday, August 23, 2011

Let's Hope This Discovery Lives Up To The Headlines

Over the weekend we saw a lot of news coverage of the article in Nature regarding Dr. Siddique's work on a biomechanical commonality among the variations of ALS.



The headlines imply that "the cause" has been found. It's a biomechanical cause. It's not so actionable as when we learned that smoking caused cancer; however, it's an important element of understanding a disease that has been a medical mystery for far too long.

Saturday, August 13, 2011

THIS Is Why DOD Medical Research Makes Sense

Earlier this year Senator John McCain said,

“The aspects of the Defense Appropriations bill that need to be taken away, eliminated, are $300 million for medical research. I am sure the medical research is important, but it has nothing to do with national defense.”

Now take a look at this Marine's obituary --

http://www.tampabay.com/news/military/advocate-for-veterans-in-camp-lejeune-tainted-water-case-dies-at-age-72/1185584

Joe Moser is exactly why the DOD should be doing medical research.

If a defect in airplanes were causing those serving our country to be killed, you can bet the DOD would swarm over that problem, and rightly so. If a defect in a rifle were causing our soldiers to be killed, you can bet the DOD would be investigating and correcting that problem. If uniforms were causing horrible rashes, surely the DOD would be figuring that problem out. Why would we ignore ALS and breast cancer?

When service-related diseases are killing our Marines, medical research is a defense issue.

Friday, August 5, 2011

This Is Pretty Cool

...but we hope not too cold. We love people who make waves!




They Had No Idea That This Was Service-Related

And there is no excuse for our legislators to have no idea. This is an unacceptable "fringe benefit" of serving our nation in our military.

Mike keeps fighting for our country in ways that he never expected.