ALS Does Affect Memories

And we don't do enough to fix that very fixable problem.  Last week we saw an exquisite example.

People who are perfectly healthy today can be slapped with an ALS diagnosis at any time.  Welcome to the rookie camp you never wanted to join. Wham. It's a fast-moving nightmare and families scramble to become knowledgeable and find some ways to fight and cope.  There is so much to learn and the downhill train is going fast.  And it's often over in a few months.

The ALS Association had been promoting its June 21 "Virtual Listening Tour" for weeks.  That's a nice concept -- for people in the ALS trenches to be heard.  Many of us preregistered as instructed.  A few hours before it was to start, I received an email that it was only for people with ALS and "current" caregivers.  I did not join as a result.  Later I got the link to the recording that I requested.  And as I listened to the listening, the memory problem became so apparent.

There was a chippy exchange between ALSA officials and a young woman with ALS over the investment of the ALS Ice Bucket Challenge millions.  The dying young woman spoke to urgency and boldness.  ALSA representatives rigidly defended a deliberate, long-term approach to its windfall.  The gap in perspective was huge (and I hope that there actually was "listening" amidst the defensive dialogue).

So what does this have to do with memories?

It has everything to do with institutional memories and public access to pertinent information.  You see, people in the throes of ALS don't have the benefit of knowing a lot of ALS organizational and scientific history.  Most everyone is a relative rookie and extremely busy.

Pertinent history and memories are continually lost in haystacks that are impossible for those rookies to search.  There is no orderly place to go look for past scientific investments and outcomes.  You constantly reach for information and get press releases and announcements.  You peruse the obvious from the nearest haystack and simply don't have time to dig deeper.  That's a terrible problem.

People dealing with ALS need orderly access to research investment amounts, dates, recipients, project descriptions, and outcomes.  Come to think of it, scientists and investors and donors and the organizations themselves could benefit from that history, too.

How are we to understand exactly where ALS Ice Bucket Challenge dollars have been spent or committed and projects' progress?  We have uplifting press releases and tax returns and financial statements and PubMed searches, none of which tell the story clearly.  If you have a rock-solid story to tell, please tell it transparently and continuously!  

Neuroscience research is risky, but we should learn from every dime that was spent on ALS research 20 or 10 or 5 or 2 years ago or 2 weeks ago.  We need searchable, accessible documentation to leverage the disappointments and the duds.  We get nothing.  I can't tell you how many times those of us with longer memories who hang around the fight wonder what ever happened to various "promising" or "exciting" research from the past.  Information is a precious resource whether or not it is uplifting to review.

It's quite possible that no matter how slowly or quickly ALSA takes to spend the ice fortune that we won't get a successful therapy, but we had darned well better learn more than we get today from a very staged haystack.

And, oh my, dates and outcomes will shine light on those urgency gaps, too.

Every year since I can remember, I've heard how this is the most exciting time for ALS research.  When I was a "current" caregiver 20 years ago, that made me feel good.  Now that I have more memory, it makes me realize what a poor job we do at learning from the past in order to work smarter and faster for the future.

Is anyone willing to fix a very fixable memory problem?

Listening 1,2,3

Chapter 1

Nice.  It's always helpful to feel that you are being heard, and I always learn a lot from hearing the perspectives of others.  I registered.  I blocked time on my calendar.  I prepared some thoughts.

Chapter 2
A couple of hours before the call was to begin...

Well, bummer.  Caregivers who have lost loved ones to ALS have a lot of interesting perspective and experience to offer.

Chapter 3
I asked if I could submit comments for ALSA executives and trustees "listening" and was given this email address.

I submitted the following:

Below are two comments that I would like to have made on yesterday afternoon's Listening Tour call.  I hope that this perspective will be helpful to the executives and trustees who are listening. Thank you.
_____________________

1. ALS Registry

The CDC’s ALS Registry has been a disappointment on many levels – from process to oversight to deliverables.  ALSA controls most of the oversight by being lobbyist-in-chief for the project funding and by influencing so many of the appointments to the annual meeting group. 

Please make a serious, tough, businesslike review of this terribly expensive project. 

It has few of the characteristics of a smart, effective disease registry as cited by a recent report from FasterCures.  Completeness is certainly an issue that clouds any ATSDR reporting from the registry.  The project has a classic case of scope creep and distracting gingerbread.  Delays are rampant (we’re still waiting for the second annual report due last summer) and they are sloughed off with “it’s the government” excuses.  Appropriations are never substantiated to advocates with budget details before we're sent to Capitol Hill to ask for yet another $10 mil.  Oversight is hardly independent, especially given the financial relationships among those at the annual meeting.

It’s easy for charities to develop blind spots.  Has ALSA simply become an enabler on a most expensive project that has failed to live up to what a registry needs to be in 2016?  Please take a look at this report as a comparison to what we get -- https://www.cff.org/2014-Annual-Data-Report.pdf

We need some accountability at all levels in this project.  $70 million+ is an obscene amount of money to have plowed into  something that has not delivered what we need in an ALS registry.  

2. ALSA Inspire "Community"

I don't understand why you have allowed the Inspire ALSA “support group and discussion community” (formerly known as the “virtual advocacy community”) to languish in the manner it has.

https://www.inspire.com/groups/als-association/ 

People needing support and answers stumble across that site, they see the ALSA logo, and they expect trustworthy help.  Instead they often get terrible or no advice and there is no active contribution from ALSA.  That’s misleading for people with ALS and caregivers, and they sure don’t need misleading. 

Putting up a “support group and discussion community” website and simply slapping your logo on it and stopping by every few weeks to censor inappropriate postings isn’t right.  Please just pull the plug on it.

 I hope that we receive the link to the transcript soon.  I would like to hear or read what others had to say.

___(Your Name Here)___, Tear Down This Wall!

It's a "now" moment for each of us.  Yes, you.  The stars are aligning and we must seize this moment.

We finally have some considerable focus on the huge protective wall between people with quickly fatal, untreatable diseases and experimental drugs.  We need to punch some holes in that wall.  Now.  Today.  We can do it. We must.

For a little over a year, a grassroots group of people fighting ALS became an informed activist group pressing the FDA, legislators, and drug developers.  They are smart.  They are full of energy.  They are fearless and nimble. Many of them are dying.  They experience the pain and understand the flaws of the status quo.  They are www.hopenowforals.org and they are on the FDA"s radar.

A few months ago we saw some considerable activity from another small group, www.myrighttotrynow.com . They proposed three pieces of legislation to punch some holes in the big wall between people dying of ALS and investigational drugs.  Their rally on Capitol Hill drew national attention on Thursday.  We stood in visible solidarity with advocates representing other terminal, unmet-need diseases.  Finally.

And last night, we saw a Vice feature, "Die Trying," on HBO that said it all, thanks to Angelina Fanous, a talented Vice writer/reporter with ALS.  Follow her @notsovanilla on twitter.  You will learn a lot.  And watch the Vice piece.  

The people with ALS whom we saw on Vice last night are still alive.  It's critical that we punch some holes now in the big protective wall that the FDA has around us all.  Sure, relatively healthy people need lots of protections.  Sure, people with existing treatment options need protection from things that may not be any better (or may be worse).  But people dying from ALS do not need to be protected to death.  We must act now.

When people with ALS have died, we seem to engage in some kind of societal hand-washing.  They're gone and are no longer suffering.  They are remembered as courageous and have impressive obituaries.  We move on and keep raising funds and talk of "promising" research.  That stinking treadmill must stop.  Now.

So please act, now.  It's as simple as sending some "Tear Down This Wall!" emails.  Watch "Die Trying" first, and you'll know what to say.  als.vice.com #viceonhbo

Please speak up to:

1. Dr. Janet Woodcock at the FDA janet.woodcock@fda.hhs.gov .  I'm asking her to use paths such as Accelerated Approval more aggressively with terminal, untreatable diseases.  She gets it.  She just needs to feel the pressure that only we citizens can exert.
2. Your two U.S. Senators and your Member of Congress, asking them to  co-sponsor any or all of Federal Right to Try legislation, the REGROW Act, and the RESULT Act.  You can read up on those at http://myrighttotrynow.com and they have tools for submitting your request.  These are pieces of legislation that will literally punch through some of those 1960's concrete barriers.
3. President Obama at https://www.whitehouse.gov/contact telling him that it is urgent that the Executive Branch's FDA not build walls between dying people and experimental treatments but rather tear a few down.

This is our "now."  This is the moment.  Five emails.  Please act.  Thank you.

But You Were Just Here

May 10, 2016, was ALS Advocacy Day on Capitol Hill.  Hundreds of us asked for legislation, including faster paths for investigational drugs to reach people dying from ALS.  May 10.  Just five weeks ago.




"But you were just here.  These things take time."
"Nothing can be accomplished before the election."
"It's politics."
"Legislation can take years."
"You don't understand the system."
"Recesses are coming up. Not much will happen."

Sorry.  We're not accepting any bureaucratic excuses.  We can do this. We must.  Here's why.

On Thursday, June 16, 2016, hundreds of us are showing up on Capitol Hill again.  So soon?  Yes.  You see, there were 600 Americans alive with ALS who saw what happened on May 10 who have since died.  600 families who heard about all the hoopla on May 10 have since buried their loved ones.  600 American lives in just a few weeks.  600 lives.  So many.  So soon.  So fast.


We need for legislators to do their jobs.  Now.  ALS moves quickly.  We need to step it up a notch to address the needs of every American family dealing with ALS.  Now.  We can. We must.

Please speak up.  Please contact legislators and let them know that these 600 lives matter as do the next 600.  This fast, continuous carnage is outrageous.  The FDA processes that work well to keep us healthy people safe literally protect dying people to death.  There are three pieces of legislation for your consideration and action at www.myrighttotrynow.com .

600 lives in just the few days since May 10.  600 funerals.  600 families grieving a mother, father, son, daughter, loved one.  Just since May 10. #600lives

It's urgent. We will not accept any bureaucratic excuses.  Period.

He Took The Ego Out Of SoMe And Made A Huge Impact

Late in 2014 a few people with ALS were asking questions about an experimental drug in the forum at als.net.  After  few weeks of frustration over the time it takes for people with ALS to get their hands on investigational drugs, a gentleman with ALS quietly posted a change.org petition requesting access.  These things happen all the time, but Nick Grillo struck a chord with hundreds of people who want those with ALS to have a better path to experimental therapies.  Nick worked online and a few hundred signatures became a few thousand.  Wow.  People were interested.  Nick kept working and updating the petition and it became ten thousand.  Holy cow.  People were paying attention.  Media caught wind of it and it grew.  Organizations were having to answer questions and were trying to figure out who in the world this Nick guy was.  He quietly brought together different petitions and became the thoughtful glue that brought individuals into a smart new organized group called Hope Now for ALS.


On a cold, dreary March day in 2015, individuals showed up in Washington to make some noise.  This was not a highly-orchestrated Advocacy Day.  This was individual people in the trenches with ALS who had studied and broadened their scope beyond one drug.  By this time there were hundreds of thousands of signatures on the growing change.org petition.  Nick couldn't be  at the rally in person, but this was his in many ways.  This was a moment in the fight against ALS.




By May, 2015, outside the big orchestrated Advocacy Day hotel, an even bigger group of individuals rallied.  These were thoughtful, well-informed people involved with ALS.  They were getting the attention of the FDA.  Hope Now for ALS became stronger yet still true to its grass roots.  And the petition grew and the ALS establishment was still trying to figure out who Nick Grillo was.

And the petition had almost 800,000 signatures.

That's big.

Nick died this week.  His quiet impact was huge.  He helped individual advocates find their voices and power.   Nick wasn't about Nick.  His work was always about getting faster access to investigational drugs for all with ALS.

Nick Grillo changed the game, and we are grateful.  And we must carry on.