We Hope They'll Show This During The Superbowl!

Drew Brees for Team Gleason from Team Gleason on Vimeo.

Thank you, Drew Brees!

Wish We Used Stats To Scare Up Support

In yesterday's Wall Street Journal, The Numbers Guy, Carl Bialik, has another interesting column. This time he writes of health not-for-profits who find ways to present scary statistics to state their cases for support.

Article (subscriber content)

Related Blog

Here is a comment posted below the article --

Unfortunately disease prevalence has traditionally been used to establish relative priorities for much research funding, and prevalence simply doesn't tell the story for some diseases. I've been involved in the fight against ALS (Lou Gehrig's Disease) for a number of years. It has a relatively low prevalence and a high incidence, and therein lies the problem. It's like a cruel game of musical chairs where we keep pouring people into the room and when the music stops, there are very few chairs. The only exit is a door labeled "death." Many of our ALS organizations are resigned to the fact that disease prevalence has been the gold standard for government and private research funding priorities. That attitude will never bring ALS the attention it needs to be handled as an urgent, fatal, and mysterious disease with a horrific throughput. I wish the ALS cause had some of those numbers people who can express the odds in a way that would make every healthy person squirm!

Here Are Some Realistic Goals

Occasionally ALSadvocacy is chided by some people who work for ALS organizations. Some ideas such as inter-organizational coordination, awareness programs with global punch, a case study of the cost of the disease, educational programs at many levels, normalized reporting on annual investments in research, or a new standard for measuring a disease's impact are perceived as not being realistic.

Perhaps we can agree on a few goals for 2012 that are completely "realistic" from any perspective. Here are two.

Insure that every newly diagnosed ALS patient in the United States

1. Is immediately advised of the importance of self-enrolling in the CDC's national ALS Registry.

2. Is immediately advised of all clinical trial options available.

Those are simple. They are deliverable. They are measurable. They are important. They are not happening today. If they're not "realistic" then perhaps our organizations should find an easier disease to fight.

Remember The Over 5,000 American Lives Lost to ALS in 2011

Thanks to ALSA Philadelphia Chapter for pointing this opportunity out to remember loved ones and to raise some huge ALS awareness in The New York Times --

http://submit.nytimes.com/lives-they-lived

Please spread the word to all who have lost loved ones to ALS in the last year. The holidays are rough, and this is a good way to remember and teach others about the toll that this beast of a disease takes.

Who Represents Patients In This Puzzle?

Here is an interesting perspective on clinical trials --

http://bioworld.blogs.bioworld.com/2011/12/13/it%E2%80%99s-about-the-patient/

ALS certainly poses a completely different set of challenges for the drug companies trying to move a therapy forward, yet the question about remembering the patient has a special sting with ALS.

Wow!

Nothing Is Easy With ALS

And sometimes the obstacles are just wrong.

http://www.alsa.org/news/archive/fda-approves-neurx-diaphragm.html

There has been an interesting saga described on the forum at patientslikeme.

A man with ALS recently made arrangements to go hundreds of miles to Cleveland to have the DPS described in the article at the above link "installed."

At the 11th hour in Cleveland his insurance carrier denied this treatment. He packed up his things and went back home.

Note that this man has ALS and travel is difficult and the breathing that he is trying to preserve with the DPS diminishes every day in the relentless ALS downhill slide.

Now he has finally found out what the difficulty was with the insurance coverage. The insurance company was not aware of the FDA approval of the DPS for ALS. The insurance company hasn't learned how to Google? Everything is fine now and he can go back to Cleveland for the procedure.

No, everything isn't fine now. The patient was jerked around by a healthcare delivery system that included an insurance company that made a big mistake at his expense. Precious time was lost. Precious resources were spent by the patient because an insurance company made a big mistake.

Nothing is easy with ALS, and we have a healthcare delivery system that continues to show its weaknesses at the expense of people trying to deal with this disease. Just as they introduced stress tests for banks during the banking crisis, perhaps ALS could be the stress test for healthcare delivery. Few organizations would pass.

And Walks Are More Than Fundraisers

They are reasons to talk about ALS in communities and in the media. They are a means to generate the awareness that will finally impress the urgency of the problem upon the healthy. They are a way to put ALS in the spotlight it needs so that we can break out of our rut of still having no known cause and no cure.

Are We Literally Protecting People With ALS To Death?

Here is an important perspective from a man with ALS. It was posted on the ALS TDI forum where patients with scientific backgrounds are collaborating and experimenting and sharing data.

I have a slightly different perspective than most coming from the radiation oncology field. The things we put our patients through would seem downright medieval to most. We expose people to enormous amounts of radiation that often makes them so sick they almost die form it. We have perfected the dose to bring them to the edge of death but not beyond. We all know what chemotherapy patients go through. They lose all the cells in their stomach and can barely eat for weeks. Again, we bring these people to the brink of death because that is what it takes to kill the cancer cells.

People with ALS are in no less dire straits than people with cancer. Getting sick from a potentially life saving cure should not deter us from trying. No doubt there is a risk with this sort of thing, perhaps even death, so only those willing to risk it all should attempt it, but we risk it all by doing nothing.

Now THIS Is Awareness

http://www.telegraph.co.uk/news/worldnews/8172828/World-Aids-Day-Bono-turns-Sydney-red.html

Since the top leadership from ALS and MND organizations worldwide are in Sydney at this very moment for their annual summit, perhaps they'll get some ideas about how to raise awareness. It is important. The AIDS cause knows that. When will the ALS cause figure it out?

If any of the ALS delegates or researchers went to see Bono light up Sydney, lets hope that they went to be inspired and not simply entertained.

There's More To Chicago Than The Travelogue

We hope that the scientists will come to Chicago for more than the restaurants and the skyline and the shopping.

This is Chicago, too... a great American city with ALS on its mind!

http://www.lesturnerals.org/international-symposium/

There Is Redeeming Social Value in Twitter

We are getting an interesting window in to what is happening at the International ALS MND Symposium in Australia via twitter. Watch for hashtag #ALSSYMP ... and thanks to @alstdi and @mndaustralia for their interesting tweets from the Ask the Experts session.

Perhaps this will plant a seed that people with a disease that steals their ability to speak and travel and be mobile deserve more opportunities to be a part of the conversation with those who are searching for a treatment. Surely there would be some synergies to these parties knowing each other better.

Yes, twitter is for more than self-serving organizational announcements.

Ask The Experts, But Don't Count On Asking Too Much

Tomorrow night (U.S. time) the big international symposium on ALS kicks off, and the traditional "Ask the Experts" session is being hosted by MND Australia, the host organization. This year we are pleased to see that people will be able to participate online.

http://www.mndaust.asn.au/uploads/30227/ufiles/Final_AtE_programmme_and_papers.pdf

Take a look at that agenda. An expert moderator and four subject-area experts, each of whom will speak for 20 minutes. They have left a whole 60 minutes at the end of the agenda for Q and A.

Ok, experts, let's think about this. The title of the session is "Ask the Experts," yet you're doing most of the talking. The asking part isn't until the very end, and if it's anything like last year's session, there won't be time for over a couple of questions. Perhaps "Listen To The Experts And Ask A Question If You're Incredibly Lucky" wasn't a catchy enough title?

Let's hope that the experts keep things on schedule and don't have another commitment that will keep them from answering all the questions that may be sent their way.

People with ALS are constantly fighting the ticking clock and a healthcare delivery system that doesn't listen. Hmmm.

For those in the U.S. who are interested, timing is 10pm start EST... Access information is can be found with the agenda at the above link.

And We Wonder Why ALS Clinical Trials Aren't All Full

Pretend you were just diagnosed with ALS and are googling to find out what you can do to fight it. Your family members are probably doing the same thing. Have them join us in some experiments.

You go to the trusted sites of the big organizations to get information.

Go to www.alsa.org ... www.mdausa.org ... www.als.net ...

Experiment 1:

Look around at their information for new patients. Are clinical trials brought to the forefront as something that you should be considering now, before your short window of eligibility closes?

Experiment 2:

This time forget about them suggesting clinical trials to you proactively. This time pretend that you're on a mission to get some information about clinical trials. Look directly for clinical trial information and try to find a resource that you can email or call to discuss the clinical trial process. NEALS and ALSA have a dedicated clinical trial expert available. It's not easy to find the contact information, is it?

Experiment 3:

Find the most promising clinical trial for your situation.

And we wonder why ALS clinical trials aren't all full.

In recent months we have seen patient advocates take on the mission of filling clinical trials themselves by e-word-of-mouth. They realize that every day that a trial is unfilled is another day's delay in having clinical trial results. Why can't our trusted ALS organizations make clinical trial information a clear part of every new patient's action kit?

_____________________________________________________

If you were stumped by Experiment 2, the information is --

An ALS clinical trial expert can be reached at (877) 458-0631 Monday through Friday between the hours of 9 a.m. and 5 p.m. eastern time and by e-mail atalstrials@partners.org.

Sarah Fisher Is Living Generously

http://www.theindychannel.com/video/29802468/index.html

Be sure to watch the video.

Every American Needs To Hear This Today

Here is a 30-second message that is direct, clear, and important. Please listen, then pass it along.

This Is Outrageous

Shame on us.

http://www.king5.com/news/investigators/Veteran-dies-waiting-for-benefits----133338928.html

Perhaps this Veterans' Day we need to stop patting ourselves on the back for the past work done for veterans with ALS and start fixing a few things!

Millions of People Looking for Bargains Are Made Aware of ALS

Thanks, Walgreens and NOVA, for helping good business intersect with vital ALS awareness in today's ad.

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)

https://sites.google.com/site/alschlorite/home

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.

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.

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.

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.