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.

Tuesday, July 31, 2012

Four Years Ago Who Would Have Known?

During the London 2012 Olympics around 340 people will die daily from ALS.  That's well over 5,000 funerals during the 16 days while we watch Bob Costas tell us of athletes who achieve greatness and others who must look ahead to Rio.

Most of those 5,000 were feeling just fine watching the Beijing games just four years ago.

Wham.  ALS changes everything and it hits quickly.

Looking forward to Rio?

Monday, July 30, 2012

Wouldn't This Be Interesting?

Would clinical trial design be different if a few people with ALS were at the table when the exclusion criteria were written?

Certainly nobody wants to compromise good science, but are today's trial designs stuck in a rut from the past?

Saturday, July 28, 2012

They Did It

Yesterday I think we witnessed the most impressive thing ever done to raise funds for ALS research.  


It was a record in many ways.  It was exciting and fun to follow. It was inspiring.

Thank you, www.channelforALS.org .

Friday, July 27, 2012

Go, Go, Go!

The Channel for ALS team is on the home stretch back to the white cliffs of Dover.  Tweets indicate that they are on a world record pace.  This is the most exciting ALS event ever!

http://www.channelforals.org/

You can watch their twitter stream there and get a link to track their escort boat live, or you can get updates and pictures on facebook.

These are amazing women doing a remarkable feat for ALS research.

If you've not done so already, please consider tossing in a few dollars for the cause at http://www.channelforals.org/ . Be a part of something special. I was impressed that they even made a note that none of the donations will go to their travel expenses.  It's for ALS research.  Class.

Thursday, July 26, 2012

Let The Data Speak

Let the patients speak.  Better yet, encourage the patients to speak.

Yesterday we heard of a "promising" new treatment that is being tested in a clinical trial for safety on 12 patients.  We heard words like "exciting" and "compelling," but we didn't get any specifics.  It will be years (if ever) before we see the efficacy data to support those words of promise.  The words were music to the ears of those of us who are not scientists, but how much more meaningful would they have been if we could have seen some data voluntarily supplied by people in the trial.

Whether people with ALS are in a formal clinical trial or in a do-it-yourself trial, why not encourage them all to share their data in public place where others can benefit from insights into the data?  I know, it's just not done that way.

Why not?
  • In a double-blind, placebo-controlled trial, it's really a purer environment if the patients are clueless.  I get that. But this is ALS, a disease like no other.  Do both the patients in the trial and those on the sidelines not have an ethical right to know more?
  • If a couple of patients start to feel better, that could cause a placebo effect of lots of patients feeling better.  I get that, but this is ALS, a disease like no other.  If placebo can save these folks' lives, then we'll be quite happy.
  • If a couple of patients get a rash, that could cause everybody to start itching.  I get that, but this is ALS, a disease like no other.  People who put up with the things that ALS throws at them aren't likely to be deterred by side effects if the end goal of life is being met.
  • If the trial data aren't living up to the promise, it could scare people (including investors) away.  I get that, but this is ALS, a disease like no other.  It's the ultimate in knowing when to hold 'em and knowing when to fold 'em... in many ways.  
  • Lay people don't know how to interpret the data. I get that, but this is ALS, a disease like no other.  There are some very smart people who get ALS. 
  • There are all kinds of privacy concerns. I get that, but this is ALS, a disease like no other.  Data can be shared online ( http://www.patientslikeme.com/ comes to mind) under a creative screen name.  Encourage each person with ALS to share data and let each decide whether there are personal privacy concerns.
We struggle with regulatory systems that are slow and very protective.  Perhaps one of the keys to helping people with ALS is already in the hands of the people.  Perhaps all stakeholders should encourage the data to speak by encouraging the patients to share data.

Please let the conversation begin.

Tuesday, July 24, 2012

Be Sure To Follow @ChannelForALS on Twitter

Watching their tweets is the next best thing to swimming the English Channel with them.  Go for the record, ladies, and thank you!

Thursday, July 19, 2012

This Can't Be Rocket Science

Google can alert me when almost anything that interests me happens. Ebay can alert me instantly when somebody bids. Amazon can alert me when a new book is available. Airlines can alert me when it's time to check in. Any Walk to Defeat ALS can alert me the second anybody donates to my team.

Why in the world can't clinicaltrials.gov alert me the moment an ALS clinical trial opens for enrollment? 



Saturday, July 14, 2012

Clinicians' and Patients' Perceptions Differ In So Many Ways

Here is a very interesting article on the perception gap related to ALS treatments.

The article cites patients' perceptions and included data shared by patients at www.patientslikeme.com.

Conclusions were that both perspectives need to be taken into consideration.  For this we needed a study?

It shouldn't be a news flash that there are many perception differences between patients and physicians; however, we seldom talk about them frankly.

Decades ago in the pre-mall age when I was in junior high, my best friend and I would take the bus downtown for shopping or lunch or a movie or to buy records (remember those?).  She was the daughter of a prominent surgeon.  She was also diabetic and had to have regular blood tests.  On one of our shopping jaunts, she had to stop at the big medical building downtown where most of the docs in our city had offices.

I had spent so many hours in that building's waiting rooms as a child that I can still remember its smell and terrazzo floors.  The eye doctor always had Readers Digests that fell apart from wear or  Highlights that had been spoiled with someone else's crayons.  The orthopedic surgeon had the constant sound-effects of typewriters.  One typist would click-clack so fast, only to have long pauses for the eraser. That would make some of the waiting patients smile.  The internist had little to read but that wasn't an omen of quick service. He managed to have a ritual waiting period even if you were the first patient in the morning.  Time went quickly because there was often a booster shot waiting.

Shortly before lunch time that day, I followed my friend into the endocrinologist's office where she was to get her blood test.  There were people in the chairs in the wood-paneled waiting room.  Ugh. I had visions of a terribly late lunch.  She checked in and was welcomed like a long-lost friend.  She went straight through the magic door that requires the dreaded waiting-room initiation for mere mortals.  She was out in five minutes and there wasn't that added step where you had to hand a check to the bookkeeper.  It was a very pleasant and efficient experience.

That was my first clue that physicians and their families do not experience the same healthcare delivery system that the rest of us do.  They have access.  They receive professional courtesies.  They certainly have earned those things.  In any profession, there is a peer respect that oils some wheels.

Do our physicians admit that they've not really experienced the healthcare delivery that their patients have?  Do they try to understand the differences?

Fortunately with the perception gaps related to treatments described in the article, physicians and allied professionals have ways to look online and try to understand those gaps... but do they?

Walking a mile in the other person's shoes is always good.  Are any neurologists up for spending a day in the other person's wheelchair during a grueling morning at the ALS clinic?  Of if you want to stick with walking in another's shoes, the caregiver gig at the doctor's office isn't a walk in the park.


Saturday, July 7, 2012

Dear Seth MacFarlane, You Give Us Way Too Much Credit

ABCnews.com carries a response from Seth MacFarlane over the brouhaha around his movie Ted and ALS --

"I lost my mother to cancer, yet there is a joke in the film which contains the word cancer," he said. "I urge analysis of context, lest the 'outrage industry' get the better of us."
You give us too much credit when you suggest that we're part of some kind of "outrage industry."  The fight against ALS has not exactly been a well-oiled machine.  It has been fragmented for many years with numerous organizations following good intentions rather than common goals.  There has never been one voice.  It would make a poster-study in having none of the earmarks of an industry.

You did give us some industrial-strength glue last weekend when your fictional John uttered the words, "From one man to another, I hope you get Lou Gehrig's Disease," to your fictional villain Rex.  Perhaps you should have picked a fictional disease for your fictional pox.

You see, we are simply angry and frustrated with you.  That is our common voice.  That is our glue. The social media that make movie lines legendary also make it possible for a grass-roots bunch of people affected by ALS to speak out.

We have lived through a week when your movie line has become a tagline for your fans on twitter.  I suspect that few of them know who Lou Gehrig was, let alone what is implied when his disease is wished on someone.  Thousands of times the line has been robotically and mindlessly repeated on twitter.  That is troubling.

I have a feeling that you didn't write what you know when you crafted that line.  If you had ever met anyone with ALS, I am certain that you would never have written it.

And your response reinforces the fact that you don't understand ALS or the people who are dying from it or the people who are left behind.  Please stop arguing like an NBA player who never committed a foul.  Please talk to some people with ALS and try to understand what's different about these people.  You will be a better writer for it.

As a writer, you choose words carefully.  Why did you choose "Lou Gehrig's Disease?"  There must have been a reason.




Thursday, July 5, 2012

Wahlberg Says, "Take It Up With Seth."

http://947freshfm.cbslocal.com/2012/07/05/podcast-mark-wahlberg-on-als-take-it-up-with-seth/

Dude?

And Herein Lies The Problem, Seth MacFarlane and Mark Wahlberg

A tweet just came through from some folks at USA Today @kimpainter @lifelinelive that points out the reason why ALS advocates are outraged with your ALS reference in the new movie Ted .

Here is the problem --
https://twitter.com/#!/search/realtime/From%20one%20man%20to%20another,%20I%20hope%20you%20get%20Lou%20Gehrig's%20disease

Go ahead and click on that link.  Sure looks like a line from the movie caught on.

Perhaps it's time for you to meet some people with ALS so that you can understand why seeing a list of flippant tweets like that is so wrong.


Tuesday, July 3, 2012

Thanks For Your Leadership, ALS Therapy Alliance

For the last 48 hours there has been internet buzz regarding Seth MacFarlane's use of ALS as a point of attempted humor in his new movie, "Ted."

Finally an ALS organization has stepped up with a statement.

http://www.marketwatch.com/story/seth-macfarlanes-movie-ted-causes-punch-line-about-lou-gehrigs-disease-to-become-pop-culture-chatter-on-twitter-facebook-2012-07-03

Now if only a few others would show that they have the backs of those with ALS by speaking up in the media.

Organizational backlash works.  This is an especially important week for the world to understand that there is still no known cause, there is no cure, and ALS isn't a disease to joke around about.