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.

Thursday, February 23, 2017

Partnership, Indeed


From an old ALS Association web page on government partnerships:  http://web.alsa.org/site/PageNavigator/ALSA_research_our_approach_partnerships_government

"The Association also has worked with Congress to secure $58 million for the registry, including $10 million in 2016."

Today ALS Association staff are on Capitol Hill for #ALSHillDay17 requesting $20 million more from our legislators for the CDC ALS registry.



That's a grand total of $78 million.  

$78 million for a project that isn't accomplishing its core mission. 

The CDC blacked out the invitation-only annual meeting and has failed to produce a public transcript or recording of that meeting before this additional appropriation request.  That in itself is revealing.

Think about that.

This "partnership" is out of control.  This is wrong.

Saturday, February 18, 2017

It's Time For Some Hard Facts



If ever a project should be dealing in facts, it's one that is supposed to be gathering data on the prevalence and incidence of ALS -- the CDC's ALS Registry.

The project has not delivered on its core mission well, and in the past few years the claim of success has been in an area of its scope creep.


Let's look at some facts.

This morning there were 76 open, recruiting clinical trials for ALS at clinicaltrials.gov.
Of those, 39 are interventional trials and the rest are observational.

Here is the list of the 25 total trials included in the ALS Registry's email notification in the last four years -- https://wwwn.cdc.gov/als/ALSResearchNotificationClinicalTrialsStudies.aspx .

Fact:  Just seven (9%) of the 76 currently recruiting trials are in the CDC notification.
Fact:  Just two (5%) of the 39 currently recruiting interventional trials are in the CDC notification.

Fact:  This is not a success story.






Tuesday, February 7, 2017

Spirit's Prayer

Spirit’s Prayer

Lord let me be simple, let me be true
A child of God, yes, that’ll do.


Lord let me be - some unblinding light
Colored image, piercing night.


Lord let me be - your hands, your feet
Clapping rhythm, dancing beat.


Lord let me see - your frame, your gold
Smiles singing, stories told.


Lord let me say – Love rules the world!
Amen, I say – “What a wonderful world”.

- Barry Crist -


Today I went to Jerry's funeral (see post below).

Some of his many friends told stories of Jerry that made us smile and laugh and appreciate the gift we had in Jerry.  Sometimes I go to a funeral and really don't recognize the person being eulogized.  That was not the case today.  It was the Jerry we all knew and loved.

Then at the end, his good friend, business associate, and lunch buddy read us his poem, "Sprirt's Prayer." 

A good way to end today.  A good way to start tomorrow.


Saturday, February 4, 2017

What Would Jerry Do?

ALS Advocacy is not fun.  The loss of life is relentless.  The funerals are heartbreaking.  The lack of progress is frustrating.

Usually I'm braced a little when we know that a person with ALS has taken a bad turn.  The grief enters and leaves at its own pace.

Last week a different kind of death and grief entered our lives like a shot out of the blue. We lost one of our most effective advocates.  His death was completely unexpected and did not involve ALS.

I use twitter a lot.  I'll tweet to pharmaceutical companies and journalists and politicians to try to shine some light on ALS.  Seldom do the pharmaceutical companies bite.  I'm just an individual tweeter, after all.  A few years ago somebody from the Lilly Open Innovation twitter account exchanged tweets with me. That led to some messages.  That led to a meeting to discuss clinical trial enrollment barriers for those dealing with ALS.  That led to many more meetings and chats at Lilly and Starbucks and Medicine X.  And that led to interactions with all kinds of activist-patients with a variety of diseases.

How did this happen?  Meet Jerry Matczak.  Jerry was paying attention that evening a few years ago on twitter and he wasn't afraid to engage in constructive interactions.  He listened.  Oh, how he listened.  He didn't get defensive.  He never said, "But you don't understand."  He really listened.

And Jerry dreamed as he listened.  He saw the potential of social media and technology to improve clinical research by making patients part of the solution. He saw bigger pictures than most of us.

And then Jerry delivered solutions.

Dozens of e-patients in every disease area have Jerry stories to tell.  He listened.  He dreamed.  He delivered.

Jerry was genuine.  Jerry was a real person who experienced his own loss of a brother to AIDS before there were effective treatments.  Jerry grasped urgency, and he knew the potential of his industry to save lives that are being lost today.


And on Thursday afternoon I received an email from another ALS advocate that Facebook was buzzing that Jerry had died.  No.  That can't have been right.  I just saw him tweet a few days ago.  It must have been some kind of mistake.  No, it was right.

The pharmaceutical industry has a gaping hole to fill now.  The man with the extraordinary gift to listen and engage e-patients and figure out solutions is gone.

My comfort moving forward is that we all have the example and the standard to follow. We just need to ask ourselves, "What would Jerry do?"