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.

Sunday, April 28, 2013

This Was ALS Awareness

From May, 2011, there were three days of display of the Piece by Piece exhibit in three very visible venues in Washington, DC --




This was grass-roots, volunteer driven (literally) and there has not been anything like it in our nation's capital for ALS awareness since.


Saturday, April 27, 2013

RT to Defeat ALS

In case you had not seen Steve Gleason at the NFL draft, here he is --

http://deadspin.com/steve-gleason-announced-the-saints-third-round-pick-483478798?utm_campaign=socialflow_deadspin_twitter&utm_source=deadspin_twitter&utm_medium=socialflow

Pretty good, eh?  Important image of sports fans everywhere to see of ALS, eh?

This morning on twitter, I simply asked five sports journalists with huge followings to retweet the link with the coverage of Steve.  Within an hour, that link had been retweeted to 100,000 people who follow those sports journalists.  My wild guess is that the majority of those who got the tweet hang onto the words of sports journalists they follow and are not very familiar with ALS.

Bingo.  That's how ALS awareness happens in 2013.

For May, ALS Awareness Month in the U.S., perhaps all tweeps can work hard at getting the big RT. We're only a few retweets away from millions of people who are ALS-clueless.

Wednesday, April 24, 2013

These Are My Questions Du Jour On The MODDERN Cures Act

I may just be dense, but I'm having trouble understanding how the patent part of this works.  I've tweeted pleas, and @modernmeds was kind enough to respond, but I think I need more than 140 characters to ask my questions.

Here is some material from the National Health Council, whence this proposed legislation comes --

http://rareadvocates.org/wp-content/uploads/2012/10/MODDERN-Cures-Overview-2-7-12-2.pdf

It includes a lot of features, but I sense that the patent protection is the most pertinent for ALS today.

Here are the descriptions of the patent aspects --

TITLE II — CAPTURING LOST OPPORTUNITIES FOR PATIENTS


Sec. 201 – DESIGNATION OF DORMANT THERAPIES

This section creates a new class of drugs, named “dormant therapies.” A dormant therapy is a new drug or biological product that has insufficient patent protection and meets the FDA definition of “unmet medical need.” The Secretary is required to establish a methodology and criteria for this designation. In its request for designation as a dormant therapy, the manufacturer must provide a list of all patents and applications for patents to which the manufacturer has rights, and must agree to waive those rights in order to receive the designation.

Sec. 202 – PROMOTING THE DEVELOPMENT OF DORMANT THERAPIES

This section provides for a 15-year period of data exclusivity after FDA approval to encourage the development of dormant therapies. The Secretary is required to make its determinations available to the public. This bill will establish a predictable pathway for introducing low-cost generic equivalents to dormant therapies.
Some examples would really help me understand.

1. What if there is a drug that is within a year of losing its patent and the manufacturer holding the patent decides to pursue testing of that drug for ALS?  It will take years to test the drug for ALS.  What happens?  What does it mean to waive the old patent rights?  What does the 15-year period of "data exclusivity" mean?

2. What if there is a drug that is within a year of losing its patent and another manufacturer is interested in pursuing it for ALS?  How would that work?

3. What if there is an old drug whose patent protection has long since passed.  Can it get new patent protection with this?

Thanks to anyone with insights. 

Tuesday, April 23, 2013

Thank You, Chicago

Special thanks to @irishoconnor and @bio1x1 for the tweets that showed us this marvelous picture from Chicago last night.  As the scientists and business interests from #BIO2013 sought dinner and their evening's entertainment, they that got a big reminder of what's really important.




Monday, April 22, 2013

Please Mark Your Calendars And Help Spread The Word

The fourth annual Worldwide Weekend of Prayer for Those Dealing with ALS is coming up May 10-12, 2013.

Please visit http://www.wehaveaprayer.org and help spread the word to anyone who might like to join in.

Thank you.

Sunday, April 21, 2013

A Month Is A Terrible Thing To Waste

In a few days it will be May -- ALS Awareness Month in the United States.

How many people who are clueless (or even semi-clueless) about ALS today will be aware of ALS by the end of May.

Don't count those 500+ Americans along with their families and co-workers and friends and neighbors who are going to find out the hard way with an ALS diagnosis.

How many?

Saturday, April 20, 2013

Don't You Wish You Could Have Been There?

Click here for the background materials for ALSA's Advocacy Conference and the day on Capitol Hill.

Their public policy priorities are again --


  • Appropriate $10,000,000 to continue the National ALS Registry at the CDC
  • Appropriate $10,000,000 to continue the ALS Research Program at the DOD
  • Enact the National Health Council's MODDERN Cures Act


Don't you wish you could have been there when they brainstormed, challenged, evaluated, analyzed, measured, questioned, disagreed, innovated, calculated, dreamed, disrupted, listened, questioned more, argued, and finally fleshed these out as the best 2013 legislative priorities possible for people with ALS?




Saturday, April 13, 2013

ALS Is A Crime

What if on Thursday, May 9, every person with ALS donned a little crime scene tape?  It makes an inexpensive belt, tie, scarf, headband, or accoutrement to a wheelchair or cane.  Ah, wheelchair streamers!

Everyone who would see the tape would ask, "What's with the crime scene tape?"  The conversation about ALS begins.

On that day dozens of people with ALS will invade Capitol Hill to talk with legislators.  Wouldn't the crime scene tape be an interesting visual in those hallowed halls?  And think of the photo ops.

And what if people with ALS everywhere donned a few strands of the tape and were seen wherever they might be that day?  Oh, and some digital pics of people with ALS, famous or not, could invade the social media.  Viral?

ALS is a crime against people and their loved ones.  Crime scene tape is inexpensive.  Anyone up for some ALS awareness?

Tuesday, April 9, 2013

Time To Ditch The Blinders And See Whom We've Left At The Side Of The Road

It's always easier to get a large group moving in a common direction if you try to keep them focused on one goal.  Cut the distractions.  Beam in on a clear deliverable. Deliver.

Over the years an annual legislative priority for ALSA's Advocacy Conference has been to provide funding for the DOD ALS Research Program.  The case is built on the fact that those who have served in the military are much more likely to be diagnosed with ALS than the rest of us.  The science is still a mystery.  The solution is a mystery.  Research funding will help solve those mysteries, and we owe that to those who give so much to keep us all safe.

Focus. No distractions. Make the case. Deliver.  But while we're making the case for those long-term research goals, can't we slip off the blinders for a few minutes and see the near-term problems that our veterans with ALS face every day today?

Take a look -- http://scjohnson63.tumblr.com/

Many of us are clueless about the VA healthcare delivery system and rules.  Add to that the complicated and difficult disease that ALS is every day.  What we see when we slip off those blinders and peek at the here-and-now is not as easy as asking for research funds.  It involves an arcane healthcare system and a disease that presents unbelievable challenges for patients and caregivers, many of whom are spouses and children.  Those challenges change rapidly, and the word "rapidly" isn't used in many sentences that also contain "VA."

Our overall sense of national outrage about VA waits rose last week.  We should also be willing to take off those blinders and look at our ALS veterans in the eye.  If we step up for them with a fraction of the effort that they gave for us, this can't be a difficult set of problems to solve.  But first we have to look.  Then we need  to work.  No show-horses needed.  This is work-horse time.

Monday, April 8, 2013

Mittens and Duct Tape To Defeat ALS?

This morning I saw a tweet from a woman with ALS --

7h If u want to understand my life , put on thick mittens then dress, eat, and type. ALS sucks!
Several weeks ago there was a posting by a man with ALS on the patientslikeme forum --
As I was fighting an itchy nose last night I had an idea how to let unaffected people have a glimpse of what life with this disease is like.  Today I challenged my facebook friends to go for two hours without touching their face or head.  Not to scratch their nose or move the hair out of their face.  So far the shortest time is fifteen minutes and the longest is 39 minutes.
Perhaps at a big ALS event, the healthy ALS advocates can volunteer to duct tape themselves with constrictions that are small outward reminders of what ALS steals from people.  Arms strapped down or a mouth covered or feet taped into an awkward position or immobilized fingers would represent a small fraction of the reality of ALS.

How would it be if people calling on legislators in Capitol Hill in May wore their duct-tape limiters... and then handed the legislative assistants, Members of Congress, or Senators some nice big mittens to wear during their meetings?  Oh, and no scratching of any itches allowed.

A stunt?  Yes.  Would it be remembered?  Absolutely!


Saturday, April 6, 2013

Can We Lead With A New Meeting Standard?

Over the years we've grown accustomed to ALS meetings that feature expert speakers, a very short question-and-answer period at the end of each presentation, verbal questions from the live audience, and never enough time to address all of the questions adequately.  That is followed by the small mob that surrounds the speaker at the break where lots more questions are asked, and we assume, answered.

We can do better.
  • Every question deserves to be asked and heard by all stakeholders.
  • Every question deserves to be answered and heard by all stakeholders
  • Every speaker deserves adequate time and resources to answer those questions.
For a disease where there are lots of questions, accessibility and speech are problems, and time is of the essence, we can certainly be a little more creative about insuring that every question is asked, answered well, and heard by all would would benefit from the information.  And surely we can archive those questions and answers to be a valuable resource for all of those involuntarily recruited by ALS before the next meeting.

When agendas are published, questions can be solicited in advance.  After a presentation, questions can also be accepted with a promise that they will be answered in a public space.  Speakers can understand that this is an important part of their engagements.

Every person with a stake in the fight against ALS has the right to ask good Qs.
Every Q deserves a good A.
Everyone will benefit.



Friday, April 5, 2013

Please Don't Lose Our Most Valuable Resource Against ALS

Over and over and over, year after year, decade after decade, ALS has become a deja-vu disease.  People with ALS try things.  People with ALS experience things.  People with ALS have theories about possible triggers to their condition.  When these people with ALS die, many of the clues that their lives and experiences harbor are buried with them.  We waste our most valuable resource in the fight against ALS -- information.

There are important ways that people with ALS can contribute their information for those who follow.

1. The National ALS Registry administered by the CDC has a self-enrollment portal that will insure that a person with ALS's basic epidemiological data are captured.  There are also periodic risk-factor surveys that will address some of those possible triggers.  Please encourage those with ALS to participate at www.cdc.gov/als .

2. Every person with ALS tries things.  Some of those things are simple like a special diet or vitamins.  Some of those things are exotic treatments.  Regardless of what those things are, it is a terrible waste not to capture some basic data around the things tried and the results (or lack thereof) that the patient experienced.  A convenient place for tracking such things so that others may learn is in the patient profile area at www.patientslikeme.com .  The website provides an orderly framework for storing and searching for data.

Information lost in the fight against ALS makes it the disease where new patients constantly have to re-invent wheels.  Information lost also means that scientists often ignore some of the simple things that past patients have found helpful.  This is a dreadful waste.

If you are a patient, please don't let your data go to waste.

If you are in a position to influence or help patients, please step up.

Thank you.




Wednesday, April 3, 2013

Which Campfire Will Defeat ALS?



Some people build a campfire as a nice place to sit around and sing "Kumbaya."

Other people build a campfire to provide light and heat.