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.

Wednesday, February 26, 2014

People Dealing With ALS Simply Don't Have Time For This

How does a patient or caregiver find an ALS specialist or clinic?

Let's see...

http://www.alsa.org/als-care/newly-diagnosed.html 
http://mda.org/
http://wwwn.cdc.gov/als/
http://www.alsconsortium.org/contact_a_disease_specialist.php
http://www.alsworldwide.org/search.php

People with ALS simply don't have time to search five different times to see what pops up (and then try to sort out the differences).

These organizations often speak proudly of collaboration.  Here's an easy way to collaborate.  Let's have one excellent search tool that you all share.  Let's have the same accurate, complete information pop up regardless of where a person with ALS or a caregiver goes online.

People dealing with ALS simply don't have the time to deal with the hodgepodge of search information they get today.

And our ALS organizations don't have the money to waste on the redundant, expensive, and mediocre search tools that they provide today.

We're looking at a win-win solution here!


Tuesday, February 25, 2014

Nobody Blindly Picks A Hotel Or Restaurant In 2014

Who doesn't check out Tripadvisor before booking a hotel room in a strange city?

Who doesn't look at Yelp reviews before trying a new restaurant for a nice dinner?

Yet people with ALS who are choosing clinics and organizations and equipment dealers and physicians and clinical trials are expected to do so based on zip codes and blind faith.  A poor choice has much larger implications than a noisy hotel room or a rude waiter.

Thousands of people use ALS resources every month yet we've not captured their experiences, thoughts, and impressions to help the next person.  

ALS continues to be the disease of reinventing wheels.  

Monday, February 17, 2014

Who Picks The Number? And Why?


From a recent ALS Association announcement --

http://capwiz.com/alsa/issues/alert/?alertid=63056586

We are excited to let you know that on January 16, Congress passed legislation that included ...  an additional $6.5 million for the National ALS Registry. The funding for the Registry is an 11% increase over last year! The legislation now heads to President Obama who is expected to sign it into law.
... The fact that Congress increased funding for the Registry in a year when cuts were the norm is a testament to the effectiveness of your advocacy. 

Every year we advocates are given a dollar number (from ALSA) needed for the CDC ATSDR national ALS Registry to continue.  We advocate to our legislators.  The number gets a very predictable haircut, and the CDC ATSDR has a budget for a well-funded project.  Every year.

Who comes up with the number?  What are the components.  Why did we ask for $10 million and not $15 or $20 or $1 or $5 million. Nobody talks to us advocates about the number.  Nobody discusses it at the invitation-only annual meeting per the recently published meeting minutes.

It just is.

Who picks the number?  Why that particular number?

Very simple questions.  The answers will make effective advocates even better.

Sunday, February 9, 2014

It's Zebra Month

Physicians are trained that when you hear hoofbeats, they are usually from horses and not from zebras. You don't go looking for zebras.  Most things are horses.
  • Picture the older patient with the hoofbeats of slurred speech. Stroke?
  • Picture the younger patient with the same hoofbeats of slurred speech. Alcoholism again?
  • Picture the homemaker having trouble opening jars. Arthritis?
  • Picture the executive whose left arm feels funny and whose golf shot has gone all to pot. Pinched nerve?
  • Picture the young athlete who can't hit the baseball. Time for eyeglasses?
People with ALS have incredible stories to tell of long and expensive paths they had to take to get a correct diagnosis. It often takes years for physicians to look past all of those red-herring horses and see the zebra ALS. We don't know how many people die every day from ALS without ever having been diagnosed correctly.
Doctors are trained not to jump straight to that "rare" diagnosis. Even if they suspect ALS, they don't want to make the diagnosis. There is nothing in the doctor's bag that will treat ALS, and there is no more difficult conversation on earth than to share that with a dying patient.
There are hundreds of such zebra diseases today.  Every one takes a dreadful toll on individual patients and their families.  Zebras are out of the mainstream for healthcare delivery and medical research.  That's a costly mistake in many ways.
It's no secret that I'm not fond of the "rare" word to describe diseases.  It gives some the impression that these diseases can't strike them.  That's dead wrong.  "Rare" does not mean unlikely.  A zebra can strike any family at any time, and it's a lot more likely that you think.
It's Rare Disease Month.  It's our chance to remind people that there are herds of destructive zebras whose hoofbeats must not be ignored any longer.

Saturday, February 8, 2014

Information Is A Terrible Thing To Waste

Almost two decades ago Mom asked me to pick up some liquid Centrum at Walgreen's.  She read that vitamin E might be helpful for those with ALS.  Later that same day I stumbled across a passage in Lou Gehrig's biography about Eleanor Gehrig picking special greens in Central Park for Lou.  They were high in vitamin E and there was a theory that might help ALS.  Over 50 years later we were grasping at the same straws.  That's nuts.

On an ALS message board this morning I'm reading about people with ALS trying creatine.  The creatine, creatinine theories have been around for decades, too.  Thousands have tried it, yet families dealing with ALS today are having to reinvent wheels because we have not retained good information for them.

If only Eleanor Gehrig and my mother and everybody who has tried vitamin E or creatine would have left some bread crumbs for others to see what their experiments did (or didn't do) for them!

Everybody with ALS tries things.  Some things are pretty innocuous and some aren't. Some things they tell the doctor and some things they don't.  The information on all of those things is a terrible thing to waste.

Today many people with ALS deal with specialized clinics and ALS not-for-profits for advice and support.  Many discourage patients from sharing data. Why?

I'll never forget one reason that I heard from an ALS Association patient services staff member -- "Our neurologist doesn't like patients posting their data at patientslikeme.com because it makes them lose hope."  Trust me, when you're dealing with ALS, the help that a healthcare team delivers is a lot more valuable than their hope.

People with ALS are so vulnerable to people peddling hope without data.  Let the data speak.

One ALS not-for-profit is managing an access program for an experimental drug.  Think of how valuable it would be for new patients considering the investment if past participant data had been shared.  Data trump rumors and anecdotal reports.

Websites pop up with protocols and exclamations of people with ALS improving.  People who try things that fail seldom put up a website to announce that.  Why aren't data being shared that reveal the good and the bad and everything in between?

I beg healthcare professionals and not-for-profit staffs to encourage (or at least not discourage) people with ALS and their caregivers to let their data speak.  You have influence.

People with ALS and caregivers, please leave some bread crumbs for the next person who travels your difficult path.  Please encourage your peers to share. Post your data with your progression and the things you are trying.  Don't just post the anecdotal good.  Post it all.  You own your data. Let your data speak.

Your histories and information are a terrible thing to waste.

www.patientslikeme.com provides a nice framework for people with ALS.  There are others.  We need to stop the waste!


Tuesday, February 4, 2014

Some Of You Missed The Best Super Bowl Party Ever

The crescendo started on Friday, then through Saturday, and it hit the heights on Sunday.  All day on Sunday single voices passionate about ALS and the #empowering Super Bowl ad told their social media friends who told their kids who told their friends who told their neighbors who told their relatives who told their co-workers...  And on it went.

And the #empowering Microsoft team listened, and they talked to us!

This was ALS awareness to the hilt.

Live tweeting has never been so much fun and so important.  As we look back at the reach of a bunch of online individuals and a major corporation working together to spread the message of #empowering people with ALS, it was a pretty amazing day.

Thanks, all.  Thanks, Microsoft.  Thanks, Team Gleason.

And if you missed the party, well... you just had to be there.

Sunday, February 2, 2014

#Empowering People With ALS

Mom died from ALS in 1997.

When we were losing her, she still had a strong grip, but her dexterity to work buttons or a light switch was completely gone.

Enter The Clapper.

I'll never forget watching her the first time she clapped on and the lights came on.  Clap on, clap off.  It was a huge victory.

Today we'll see how far technology has come for people with ALS when Microsoft shows Steve Gleason using Microsoft Surface during the Super Bowl.  This is another huge victory.

People with ALS deserve these victories.  They deserve a treatment, too, but in the meantime, thanks to all who are #empowering them!

Saturday, February 1, 2014

Might Microsoft Be About To Deliver The Best Super Bowl Commercial Ever?


And as we watch the big game, we'll take our breaks during the GoDaddy commercials so that we'll be near the television in case the world will get a glimpse of something meaningful like Steve and Microsoft Surface.   This would be the best Super Bowl ad ever.  Nicely done, Microsoft.