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, October 26, 2011

Wish We Could Go Back To GI-Bill Education And A Great Home Loan

... rather than having our vets get the awful fringe benefit known as ALS.



Reverse Engineering To Defeat ALS

Consider a disease that seems to find very smart people. The disease strips them of their motor functions, but it lets them remain very smart. The disease has no known cause. The disease has no cure.

Consider a disease with a history of disappointing clinical trials... trial after trial after trial... until this summer when one product (Neuraltus NP-001) seemed to have some positive effects on some individuals. It wasn't a miracle of biblical proportions, but it was like a parting of the Red Sea by ALS standards.

Consider a disease whose clinical trials involve a placebo group and have a timeline that is longer than the life expectancy of many patients. Consider a disease that leaves thousands of patients on the bench because they have had the condition too long to qualify for a clinical trial.

Should it surprise anyone that the same smart people whose lives are at stake have turned out to be a pretty impressive online band of reverse engineers? Give them a slight glimmer of hope and they don't sing and dance. They put their minds to work figuring it out. Smart people from every walk of life get ALS, and it has been pretty impressive how they found each other and decided not to be spectators in a life that dealt them a really bad hand.

Take a look --
http://www.als.net/forum/Default.aspx (Oral Sodium Chlorite thread)


Certainly it's risky. There is no doubt that these are courageous people who are cornered by a relentless disease and a drug development system that has failed them in the past. They're not going without a really good fight and an attitude to do something so that the next person will have a fairer fight.

Friday, October 21, 2011

This Is Why The Great Nolan Ryan Is Still Great

Thanks, Nolan Ryan. Thanks, Texas Rangers. Thanks, MLB.



I'm still for the Cards but feeling awfully guilty about that now ;-) This is huge visibility for ALS.

Thursday, October 20, 2011

Here Is A Perspective On A Birthday

Oh, that some creative minds might find effective ways to increase self-enrollment and patient participation in the supplemental surveys for the CDC's ATSDR National ALS Registry!

Here is some perspective on a "birthday" and on keeping our eyes on the prize --

http://alsspreadtheword.blogspot.com/2011/10/its-project-for-petes-sake.html

Let's make this registry work to provide the epidemiological clues that scientists need. Let's not sing until the data speak.

Tuesday, October 18, 2011

Is This A Sign Of New Things To Come?






On the main page of http://www.thehill.com/ ... there was a scrolling ad about a veteran with ALS. It had an ALSA logo and was promoting PDUFA.



We can't wait to see if this is a sign that ALS is about to have some in-your-face awareness!



Veterans - Time To Be Seen And Heard!

Here is a nice website from the ALS Association...

http://www.alsa.org/advocacy/veterans/

If you are a veteran who has ALS or you have lost a loved one to ALS who served in the military, please add a picture. This will give the mysterious connection between military service and ALS some much-needed visibility!

Please pass this word along. Thank you.

Let's Hope

Let's hope that Jason Alexander noticed the new shoes on the man with ALS. Those shoes will never be worn out. Let's hope that Jason Alexander noticed that the man with ALS didn't sip on coffee like the others in the room. Let's hope that Jason Alexander takes Steve and his disease personally. Lets hope that Jason Alexander will talk off-script about this outrageous disease. Let's hope.



From the statement from the ALS Association :
"Over the coming weeks the ALS community will begin seeing these materials launched as part of The Association’s more aggressive public awareness efforts. 'We are determined to bring ALS out of the shadows and into the light of public awareness' said Gilbert."

Let's hope that it will be aggressive and part of everything ALSA does. Let's hope.

Let's deliver.

YOYO (You're On Your Own)



For the recently diagnosed ALS patient, it's not quite as easy as it sounds. Here are some things that may help.

  1. Some neurologists aren't current on the status of clinical trials. Some neurologists discourage clinical trial participation lest the trial may do harm to the patient (like ALS isn't the ultimate harm). Some neurologists advise patients only of clinical trials in which they are investigators. Some neurologists advise patients only of clinical trials in which they are not investigators. Some physicians have the human "not invented here" frailty. Patients shouldn't stop with the neurologist. Ask questions and ask more questions and contact the Clinical Trials Expert (who is a physician sponsored by several ALS organizations and should be able to provide objective information) alstrials@partners.org or (877) 458-0631. That contact information isn't easy to find on any organization's website, yet it's probably one of the single most important resources for a patient who might qualify for a clinical trial. Go figure. Nothing is easy with ALS.
  2. Going to the ALS Association website isn't going to provide you with a current or comprehensive list of clinical trials. Try www.clinicaltrials.gov and search for "amyotrophic." There you will find the most current list of trials and their locations and current status. It's a more up-to-date database of trials than any other organization's website provides.
  3. Look at forums at www.patientslikeme.com (also includes patient data reported by patients in formal clinical trials and in diy treatments) and www.als.net and www.alsforums.com ... and realize that not everybody there is an expert (and it's always easy to fall into the trap of listening to what you want to hear)... but you may find some information that will help you make a more informed decision about a clinical trial.
  4. Time is of the essence. Many trials limit participation to those within 24 months of onset. Many patients have lost much of that eligibility window just trying to get a correct diagnosis.
ALS is unfortunately the ultimate YOYO disease. You're on your own to dig and find answers. Don't stop with one neurologist and one website.

p.s. To ALS organizations lurking here... Please try an experiment. Pretend you were just diagnosed with ALS and want to find out about clinical trials. Do it when you're exhausted and after you've whirled like a dervish for three minutes since that's the feeling that a lot of people with ALS and caregivers have all the time. Google. Look around at websites. Confused? Try to find the phone number or email address for the Clinical Trials Expert. Confused? Look at the CDC's website. Should you expect a phone call telling you that you are a candidate for a trial? Confused?

Monday, October 17, 2011

Now We're Cooking

Video from a recent "Ask The Experts" ALS research conference in California is available here .

Thanks to the organizers and the organizations for finding a practical and considerate way to deliver information for patients, families, and other interested people.

Friday, October 7, 2011

This Red Sox's Fan Is A Champion



Thanks, Clear Channel Outdoor!



http://www.boston.com/Boston/businessupdates/2011/10/clear-channel-billboards-help-umass-and-cellucci-fight-als/ctFFUD67WW6i78aAPSiKlK/index.html

What We Have Here Is A Failure To Communicate

Last week the Diaphragm Pacing System (DPS) was approved by the FDA for people with ALS.

For years patients who were in the clinical trial of this pacemaker to keep the diaphragm working attributed it to enhancing their quality of life. Finally all patients have access to this option which could be a valuable tool as an early intervention. It's a simple concept.

This week patients are asking their physicians about the DPS and some of the docs don't seem to know about the DPS. "I'll have to look into that," translates into wasted weeks for a person dealing with the ticking ALS clock.

If there were a new prescription drug for ALS, you can be sure that docs would be ready, able, and willing to get patients started. Why the DPS, only the second FDA approved product for ALS, is such a secret among healthcare professionals is just incredible.

So, in case this is of help for those reading this, here are some links with information --
Synapse Biomedical Information (site includes Medicare information and locations with expertise)
Important Patient Q&A Document (Dr. Onders at The Cleveland Clinic is the developer of the DPS for people with ALS)

C'mon healthcare delivery system. It's past time to start delivering for people with ALS! This is an early intervention that is a much simpler decision than those later interventions. When dealing with ALS, "first do no harm" involves some added responsibilities.

Tuesday, October 4, 2011

Now, Can The Organizations Execute?

That was "organizations" (plural). Please. It's all in the execution now.