Keep The Volley Alive, Please!

The front-page, Christmas Eve story in the Washington Post was beautiful.

http://www.washingtonpost.com/wp-dyn/content/article/2010/12/23/AR2010122305469.html

It was a big-league feature in a big-league publication. How about some big-league letters to the editor from our ALS organizations?

Something along the lines of, "This is why we fight this insidious disease -- for Alan and Kathy and the tens of thousands of others who live every day with incredible courage and love."

Can You Hear Me Now?

A survey just went up at

http://als-advocacy.blogspot.com/2010/12/please-take-15-minutes-and-chime-in.html

to give grass-roots people a chance to share their thoughts and ideas on ALS advocacy.

The survey will take about 15 minutes to complete. There is some very general demographic information followed by ten sets of issues from the recent ALSA advocacy listening tour. There is a final page with a few questions to get your vision for advocacy success in 2011, etc.

It seemed like a lot of people interested in advocacy had been omitted from the recent ALSA listening tour, so here's a chance to be heard.

Please speak up! Please invite others who have skin in this game. Summary results will be shared with ALSA, ALS TDI, and MDA advocacy departments.

Let's Urge Some Journalists

http://www.healthjournalism.org/blog/2010/12/elizabeth-edwards-fervently-urged-health-care-journalists-to-inform-the-public/

As the keynote speaker at Health Journalism 2008, Elizabeth Edwards urged journalists to make sure candidates told the truth about their health care plans and that journalists have the responsibility to “make the American voting public more informed.”

We realize that not everybody can be a keynote speaker at a large gathering of health journalists. Are our ALS organizations' communications people even attending? Are they even cultivating an understanding of the urgency of the ALS problem with those who love to write a good article?

Ove Glove, Chia Pet, Splint Glove 2

Here is living proof that people with ALS are clever and have more marbles than the rest of us put together...

Somebody Get This Woman A Red Wristband, Please!

http://www.politico.com/click/stories/1012/stars_in_town_for_kennedy_honors_.html

Please get Angela Lansbury a red wristband. Please. It will match the red carpet.

We Have An Awful Lot To Be Thankful For

This morning's Wall Street Journal has a wonderful article by Melinda Beck on thankfulness.

Thank You. No, Thank You
Grateful People Are Happier, Healthier Long After the Leftovers Are Gobbled Up
It turns out, giving thanks is good for your health.

A growing body of research suggests that maintaining an attitude of gratitude can improve psychological, emotional and physical well-being.

Adults who frequently feel grateful have more energy, more optimism, more social connections and more happiness than those who do not, according to studies conducted over the past decade. They're also less likely to be depressed, envious, greedy or alcoholics. They earn more money, sleep more soundly, exercise more regularly and have greater resistance to viral infections.

Now, researchers are finding that gratitude brings similar benefits in children and adolescents. Kids who feel and act grateful tend to be less materialistic, get better grades, set higher goals, complain of fewer headaches and stomach aches and feel more satisfied with their friends, families and schools than those who don't, studies show.

"A lot of these findings are things we learned in kindergarten or our grandmothers told us, but we now have scientific evidence to prove them," says Jeffrey J. Froh, an assistant professor of psychology at Hofstra University in Hempstead, N.Y., who has conducted much of the research with children.

"The key is not to leave it on the Thanksgiving table," says Robert Emmons, a professor of psychology at the University of California-Davis and a pioneer in gratitude research. And, he notes, "with the realization that one has benefited comes the awareness of the need to reciprocate."

Many of us have watched people with ALS who have an incredible sense of gratitude in the face of a disease that clearly isn't fair or easy. Lou Gehrig and thousands of men and women teach us every day that they have an awful lot to be thankful for. It matters not whether the patients are men or women, rich or poor, young or old -- we see incredible grateful attitudes. Being thankful in the face of this disease that forces you to puree the turkey and mashed potatoes takes a special courage. Gratitude won't cure ALS, but I'm sure that Lou Gehrig's attitude of thankfulness helped Eleanor as much as Mom's has helped me.

Thank you, brave people whom we have lost to ALS. Thank you, Melinda Beck.

For Better, For Worse, For ALS

Do you ever think about how you would handle those bad things that might happen down the road?

Most of us aspire to be Lance Armstrong or Robin Roberts if ever faced with a terrible diagnosis. You find the best treatments available and you fight with all your might.

Most of us would want to be caregivers like Sandra Day O'Connor or Dana Reeve if a spouse were ever slapped with a terrible diagnosis.

ALS puts a big wrench in all of those brave plans for the hypothetical terrible diagnosis. Oh, you have to be very brave, but ALS isn't a fair fight. It is like a bad situation on fast forward, and you're surrounded by people and institutions that are stuck in slow motion.

First you seek those best treatments available. The first day or two of research are incredible. They are outrageous. We're stuck in 1939. There's nothing. Nada. The best ALS centers in the world don't have a concrete plan that you can try to win the fight. Once you figure out that grim reality, ALS forces patients and caregivers to skip Kubler-Ross and get on with some challenging caregiving to make the best of the upcoming downhill slide.

Next you start to deal with it. You feel like pioneers in everything you do. Time takes on new dimensions. The healthcare delivery system doesn't know how to deliver at the speeds you need. With every decision you make, it's like you're throwing the ball five yards behind the receiver by the time healthcare delivery delivers. You do physically demanding work with a healthcare system that does not cooperate. At the same time you watch a loved one slipping away in a decline that is far too fast and somehow predictably unpredictable.

November is "National Family Caregivers' Month." We celebrate the contributions of caregivers. Perhaps it's time for us to do something concrete for our ALS caregivers. Let's fix a few things. If we can't cure ALS, then we need to help people deal with it.

"I Can't Stand Up But I Can Be Counted!"

"I Can't Stand Up But I Can Be Counted!" -- Words of a man with ALS upon enrolling in the national registry at
http://www.cdc.gov/als

Every person with ALS counts. Please be sure that you are included in the CDC's new U.S. National ALS Registry. If you have ALS, please enroll right away. If you know anyone with ALS, please pass this information along.

2010-11- Comcast Newsmakers, featuring Kay and Phil Thomas (Part 1)

2010-11- Comcast Newsmakers, featuring Kay and Phil Thomas (Part 2)

At Least It Didn't Use The Word "Lamestream!"

This is the last paragraph from a suggested letter-to-the-editor provided by ALSA for Veterans' Day --

But not enough people know about the registry. It was forgotten by the press. I hope this Veterans Day, the media will remember that our veterans and thousands of other Americans are fighting a war against ALS. And that the ALS Registry is there to help them fight back.

"It was forgotten by the press."

...and why might that have been?

...and who might have been responsible for that?

Hmmmm. Why are we blaming the media?

281-word, mass-produced, mass-submitted letters to editors aren't likely to fix the problem of ALS and the registry being forgotten by the press, either.

When will we ever learn?

http://als-advocacy.blogspot.com/2010/11/letter-campaign-take-iii.html

Great Caesar's ghost!

People With ALS Count. Please Be Sure That They Are Counted!

People with ALS in the United States have never been counted. We really don't know how many people have ALS at any moment. We have relied on estimates from small studies and death certificates. We have buried any clues that could have been gleaned from medical histories or environmental exposures with the victims. That has been a national shame in many ways.

As of last week that changed, but it's important for people with ALS to know that they need to enroll in the CDC's ATSDR U.S. National ALS Registry (a function of the United States government) to insure that they are counted.

Please encourage all of those with ALS to go to https://wwwn.cdc.gov/als/Default.aspx to enroll. There is a great deal of white space on that page, so scroll down to get more information.

We'll never connect the dots if we don't start collecting the dots.

Having a U.S. National Registry at the CDC is an achievement, but it does no good unless patients know the importance to them and the investigation of ALS that they enroll. The mission is not accomplished until every person is counted. It's time to get out some bigger or better bullhorns to let every person with ALS know!

This Should Have Been A HUGE News Week

Let's see.

On Monday the news broke that the NFL and the NFLPA would provide benefits to former players diagnosed with ALS. That was huge. For a long time there have been the rumblings about the number of NFL players who have been afflicted. For the league and the players' association to agree to provide benefits is a both an acknowledgement and a compassionate gesture. Newscasts and print media have room for NFL news at this time of year. Radio waves are filled with talk of football. Where was the coverage of the 88 Plan and ALS? Where were the good questions that should have been asked about the names of the players and the history of the problem and the studies on athletes and the controversy of head trauma and college football stars who have also been afflicted and on and on? Has the story's shelf life now past without having raised any meaningful ALS awareness? Should organizations involved in the battle against ALS also have shown some prompt public gratitude for the NFL and NFLPA working together to address the problems of their players with ALS?

On Tuesday we got wind that the CDC's ALS Registry was to be launched on Wednesday. There was to be an embargo on news until 8 a.m. on Wednesday so that the CDC's ATSDR could make the announcement. What's the point of an embargo if you're not working with the media to make the story pop? Pfffft. There was very little media coverage on Wednesday... or on Thursday. This is an important repository for retaining information on people with ALS. Thousands of people have pleaded with legislators for a number of years to make this happen. Many of these advocates did not live to see the registry launch. We could have explained the outrageous fact to America that nobody had been counting noses of people with ALS until Wednesday. Why not tell the world about the United States taking leadership in surveillance of cases of ALS? This was a reason to tell America that we owe it to all Americans to figure out if there are environmental factors that can trigger death via ALS. This was a reason to talk about ALS.

This truly was a slow news week. We saw and read more than we wanted about Juan Williams and Joe Miller and Virginia Thomas and Lindsay Lohan and whether Roddy White trash talks more than Chad Ochocinco. This should have been a huge news week about something that is a matter of life and death -- ALS. The stories were there. Who was dishing them up for the media?

Great Caesar's ghost.

Eagle Has Landed!

The U.S. National ALS registry is finally available for online entry. Any people with ALS are urged to register themselves at https://wwwn.cdc.gov/als/AboutRegistry.aspx .

Thanks to all who made this possible, and please let anyone you know who has ALS that the Registry is available to retain their clues that may enable scientists to finally figure out the disease and to respect the magnitude of the problem.

Is There A New Message That Could Capture The Attention Of A Football-Crazed Nation?

Yesterday the news broke that the NFL and the NFLPA will provide benefits to players who have developed ALS.

I hope that perhaps they will also consider doing something simple and good that will put the need for more ALS research on our national radar. How about a series of ads during the playoffs and on the Superbowl that show some of those NFL alumni dealing with ALS along side some of our brave military veterans dealing with the same challenging disease? That would get our nation's attention. That would help people understand the need to get to the bottom of a disease that cuts short the lives of some of our most talented and brave Americans.

ALS should be a national outrage. Might the NFL and NFLPA help get the word out? Those who entertain and amaze us on Sundays have a terrible something in common with those who protect and amaze us every day.

Perhaps We Should Have Taken This Approach To Project Management At The CDC For The ALS Registry

Pretend that it's October, 2008. The ALS Registry Act has just been passed. You're working at the CDC to develop the registry.

There is a big box of hourglasses. Each represents the remaining life expectancy of a person with ALS on the day you start your project. They vary. None has as much sand as you would like. Pick one. That's your project timeline.

Most of the hourglasses would have run out of sand by now.

For Those With ALS Considering Stem Cell Clinical Trials At Hospital San José Tec de Monterrey

It's that World Stem Cell Summit time of year, and last year immediately after the WSCS there seemed to be a flurry of optimistic Summit attendees with ALS who embarked on the stem cell clinical trial at Hospital San José Tec de Monterrey which Stephen and Barbara Byer at ALS Worldwide www.alsworldwide.org have rated highly.

As new patients evaluate for yourselves whether this is the procedure for you, I encourage you check out www.patientslikeme.com . In the forum area (you'll need a login i.d.) there is a thread on the 2010 World Stem Cell Summit that has some interesting data analyses performed by people with ALS. It's interesting information that may add to your decision-making process.

"We are all so vulnerable to wanting to stop the discussion when we hit the information we want to hear."

ALS - The Long Goodbye

Hard to watch...but harder to live with.
This is a family's journey with Lou Gehrig's Disease.

Through Life we learn Suffering precedes Death.

Through ALS we learn Suffering engages the Family.  

Family Caregivers Deserve A Pay Raise

As we approach the new rules of healthcare reform let us remember Caregivers are vital to ALS.  Until you are recognized as a genuine asset by healthcare providers, please follow these Caregiver Tips.

•  Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
•  Watch out for signs of depression, and don’t delay in getting professional help when you need it.
•  When people offer to help, accept the offer and suggest specific things that they can do.
•  Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
•  There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
•  Trust your instincts. Most of the time they’ll lead you in the right direction.
•  Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
•  Grieve for your losses, and then allow yourself to dream new dreams.
•  Seek support from other caregivers. There is great strength in knowing you are not alone.
•  Stand up for your rights as a caregiver and a citizen.

Placido Lansbury or Sir Michael J. Hyde-Pierce?

There is an interesting article at www.gettingattention.org this morning.

Getting Attention!

ALS advocates have longed for a big name, a star, a living Lou Gehrig, to help promote the cause. Yes, ALS needs to get some attention.

It seems to Sleepy that there are stars who are associated with causes and then there are superstars of causes. The superstars have the genuine fire and the rage. The superstars never let an opportunity to mention the cause slip by. The superstars know the value that they can deliver to a cause and they are driven to deliver 24x7. The superstars can talk off the script.

ALS doesn't need a star shining bright only when the spotlights are on. ALS needs a cause-superstar with a huge fire burning within. In the meantime, we ordinary advocates need to keep pushing for visibility and for progress and for new approaches.

Your Chance to be an ALS Celebrity

The 2011 Neuro Film Festival is a contest by the American Academy of Neurology Foundation to raise awareness through film and video about brain disorders and the need to support for research into preventions, treatments, and cures. Submit your video entry by going to http://www.neurofilmfestival.com Deadline is February 15, 2011.



Related:  American Academy of Neurology-Mindfulneess Meditation

Beware of the Human Neuron Borer !

The emerald ash borer is an insect. An infestation can kill a healthy ash tree in two to five years. Sound familiar?

The UDSA, local agencies, and Purdue University have started a program to tag all healthy ash trees so that people are aware that each tree is at risk.

With ash trees, you can apply preventive treatments and be careful in moving firewood from infested trees to avoid spreading the borer. That part doesn't sound familiar, does it?

Next time we go to Washington, DC, for advocacy efforts, perhaps we should tag all the healthy assistants and legislators we talk to that they are at risk for ALS which can kill a healthy human specimen in two to five years.

People with ALS this year were playing golf and running and pursuing life's work and pleasures with gusto before they were diagnosed. They were not sickly people. They were like every healthy person on earth. It could be anyone next. Everyone is at risk.

Nice Job, Alzheimer's Association!

Today is World Alzheimer's Day.

I saw that in the newspaper. I saw that on the CBS Evening News (both in great advertisements and as a news item). I saw a new 2010 World Alzheimer's Report at www.alz.org .

The Alzheimer's Association traditionally does a great job of describing the costs of the disease - both human and dollar costs. When I heard an ad on the national evening news that said that Alzheimer's Disease could bankrupt Social Security, my curiosity was piqued.

Nice job, Alzheimer's Association. Another "A" disease could take lessons.

Fortunately People With ALS Are Good At Spelling

Senator Lisa Murkowski of Alaska has been the ALS cause's biggest friend on Capitol Hill. Behind the scenes she has worked with her colleagues of all political persuasions to enable legislation to help those with ALS and to add to ALS research.

If you have friends in Alaska, please spread the word and ask them to consider writing in her name on their November ballots. Without her in the Senate, the work of ALS advocacy gets a whole lot harder.

Seldom do we see prominent people wearing red Strike Out ALS wristbands. Here is a Senator who wears the wristband and a profound commitment to the cause. She hates ALS. We need that rage and commitment.

Thanks, CBS, For Asking A Very Good Question

"Dayne Crist: Is Notre Dame Quarterback Heroic Or Dumb?"

http://www.cbsnews.com/8301-504763_162-20016653-10391704.html

And trust me, nobody wanted the best qb in that game more than Sleepy. Thanks for asking a question that has bothered a lot of us, CBS. Perhaps it should have been directed to the team medical and coaching staffs, too.

We Need Our Registry! Over 16 Americans Croak From ALS Every Day (Or So We Think)

This morning we learned that our U.S. government conducts an important and thorough census of frogs every year.

WSJ.com http://on.wsj.com/dzaTVS

Why has it taken Acts of Congress, far too many years, repeated trips to Washington by advocates, thousands of emails, millions and millions and millions of dollars, and we still don't have a registry of cases of ALS in the United States?

We get it that the frog census is important. It seems that our government is motivated and smart about some things but not about others. The "others" are Americans who are lost every day to Lou Gehrig's Disease and whose clues are buried with them. The human ALS carnage continues and we still don't have a deliverable from the CDC so that the dots might be collected.

This is a wart on our national conscience.

Read My Bracelet. Read My Lips. I Have All My Marbles.

One of the outrageous facts that most people with ALS learn quickly is the cluelessness of healthcare professionals regarding their disease. It seems like they don't cover the basics of the disease in medical and nursing schools... or else for some reason students don't pay attention that day in class.

This morning there was a feature in the Wall Street Journal on the new trends in medical alert bracelets. They have moved from the basics to fashion statements.

http://on.wsj.com/93kfDN

We all understand the obvious need for such warnings for healthcare professionals when an unconscious patient may have diabetes or a pacemaker.

Perhaps we need some medical alert bracelets (or even instructions like they put on pillows) for people with ALS. We could call them I-Have-All-My-Marbles tags.

"I have ALS. You probably don't remember what this means because you were taught it is 'rare' so you didn't pay all that much attention in school. Guess what. It's not so rare. I have it. I have ALL of my marbles. Every last marble. It's simply a little difficult to understand my speech, so please read my lips and listen closely when I speak. Remember, I have all my marbles. My neck is extremely weak. If you move me, please remember that my head full of marbles needs some support because my neck cannot hold it up. I am perfectly capable of making all of my own medical decisions even though my speech reminds you of someone who is sloppy drunk. I have all my marbles. Please talk directly to me. My caregiver will assist with 'translating' my speech for you, but please speak to me. My ears are good. I have all my marbles. I probably have more marbles than many people in this room."

ALS awareness among healthcare professionals should be a priority among the ALS organizations that promote ALS understanding and patient services. We in America should be ashamed of a healthcare delivery system (especially in the primary care arena) that is largely clueless on delivering effective and respectful care to those with ALS.

FPAALS, VAALS, TAALS, BAALS, FAALS, SPAALS, EHAALS, CAALS, YAALS,...

Another NFL player has been diagnosed with ALS.

http://als-advocacy.blogspot.com/2010/08/nfl-als-list-grows-once-again.html

Perhaps one of our ALS organizations needs to start some advocacy groups based on vocations. We could have Football Players Against ALS, Veterans Against ALS, Teachers Against ALS, Broadcasters Against ALS, Firefighters Against ALS, Soccer Players Against ALS, Elderly Homemakers Against ALS, Clerics Against ALS, Young Adults Against ALS.

Some of those groups seem to be growing at startling proportions.

Where is our Registry?

"No Harm, No Foul" Must Stop!

For many years people who have seen healthcare professionals miss ALS diagnoses have wondered if there's not a subliminal "no harm, no foul" waiver given to those errors. After all, there is not treatment or cure. If it had been diagnosed correctly, there wasn't anything that the doctor could have done, anyway. That's wrong, but it happens every day.

The recent buzz over Lou Gehrig and head trauma has moved ALS into the world's media for a few days, and there was an interesting statement in Time -- http://www.time.com/time/health/article/0,8599,2011489,00.html

Making such a conclusive diagnosis and distinguishing ALS from the other related diseases has not been critical until now, because there have been few effective treatments for ALS.

No harm, no foul? It's time that we change that. Until we start having cases of ALS diagnosed accurately and promptly, we'll continue to lose precious lives and not know exactly why. That's wrong.

Now We're Talking!

Ahhhh... the provocative story in the New York Times is now provoking conversation, and that's good because ALS gets so little attention.

http://www.healthnewsreview.org/blog/2010/08/nyts-unfounded-leap-lou-gehrig-might-not-have-had-lou-gehrigs-disease.html

Interesting points. Let's talk about ALS in the media. Let's talk about head trauma and triggers. Let's get our sports-crazed nation talking about a disease that is full of mysteries yet steals the most fit and talented among us.

And while we talk about the merits and weaknesses of the New York Times story, let's talk about the need for more ALS research. Let's talk about the need to retain data so that the clues are no lost. We need our ALS Registry now! Let's talk about ALS and the military. Let's keep talking!

Next Time You See Somebody On A Motorcycle Without A Helmet

Hand him or her a copy of this article from today's New York Times ...

http://www.nytimes.com/2010/08/18/sports/18gehrig.html?hp

We won't need helmet laws. The threat of ALS or a similar motor neuron disease should be enough of a motivation.

Perhaps this article will increase the urgency of the DOD ALSRP research. Perhaps this article will get the attention of the CDC so that head trauma history might be included in the ALS Registry.

By the way, Lou Gehrig is our hero -- nothing less.

Collaborate, Collaborate, Dance to the Music!

"Rare Sharing Of Data Leads To Progress On Alzheimer's"
The New York Times
August 13, 2010
http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?emc=eta1

“It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”


Sleepy heard an interesting suggestion this morning. Shall we advocate that all grantmaking organizations (including the DOD, NIH, ALSA and the MDA) investing in ALS research make it a requirement that detailed and complete data will be made public quarterly? No sharing, no grant$.

What Is Wrong With This Picture?

http://capwiz.com/alsa/home/

http://www.marketwatch.com/story/sra-wins-100-million-contract-with-department-of-defense-2010-08-10?reflink=MW_news_stmp

Today Is A Good Day To Talk About ALS Caregivers

Yesterday we read about JetBlue flight attendant Steven Slater's meltdown.

If you read far enough into the articles, you saw that Slater's father recently died from ALS.

Without regard to your feelings about air travel or passenger and flight attendant behavior, this is a perfect day to talk about ALS caregivers, especially those caregivers who lose a beloved family member to this disease. ALS is a particularly demanding disease, and caregivers not only deal with the physical demands, but they also face a daily realization of the loss that ALS is perpetrating.

Today is a good day to talk about ALS caregivers. If you hear anyone talking around the water cooler about the JetBlue flight attendant, it's a perfect day to talk about ALS caregiving and ALS orphans.

Here's A Good Read With Room For Some ALS Articles

A few months ago Sleepy subscribed to Neurology Now, a publication of the American Academy of Neurology. It is geared for the layperson. It's an excellent health publication. The articles are relevant to a number of neurological conditions and are much more informative than much health news we get in the general media.

http://journals.lww.com/neurologynow/pages/default.aspx has an online edition and an option to subscribe to the print edition. I recommend it highly. The subscription form has a list where you can select the disease that interests you. ALS / Lou Gehrig's Disease is there. Phew!

It wouldn't be all bad if they got a lot of subscription requests from people interested in ALS / Lou Gehrig's Disease. Actually, it would be great if ALS interest raised some American Academy of Neurology eyebrows.

Since national ALS organizations seem to be hanging out here lately, perhaps their communications gurus might get the idea that Neurology Now might be a great place for some interesting ALS news.

Do You Think FoxNews or CNN Might Like A Statement Or Two?

Last week FoxNews and CNN told of a man with ALS who wanted to end his battle by being an organ donor.

http://www.foxnews.com/story/0,2933,597966,00.html?test=latestnews

http://www.cnn.com/2010/HEALTH/07/29/georgia.right.to.die/index.html

ALS could be the theme of an entire class in medical ethics. Its patients face so many complicated decisions and challenges.

The wish of Mr. Phebus makes spectacular press and got the term "Lou Gehrig's Disease" on major networks. That doesn't happen every day.

Where are our national awareness organizations? We understand that this isn't the context that you would prefer for a discussion of ALS, but how can you pass up this opportunity to talk to FoxNews and CNN about the disease itself? The stories obviously grabbed some statistics from some "authority" (max 20K patients?). Could the media not have used more information about how we suspect that there may be many more cases of ALS in the United States and should know when the registry is implemented. That would be nice to hear on national television, especially since both CNN and the CDC are headquartered in the same city. How about talking about all of the end-of-life decisions that people are forced to make in relatively short periods of time? How about explaining how technology and support systems and informed healthcare professionals who understand ALS make a big difference in those decisions. How about explaining some of the emotional aspects of ALS that take PALS on a roller coaster while they try to make good decisions? How about explaining how thousands of Americans facing the ticking ALS clock are trying to figure out how to give their lives a good finish? How about explaining whether organs from PALS and from families of PALS are even accepted for transplantation? How about using your bully pulpit? How about speaking up? How about raising awareness of ALS in a situation that isn't beautiful but certainly sheds light on the disease? The big network cameras were rolling. The subject was ALS. We expect you to show up and speak up and explain the disease to the world.

Poor Man's Guide To ALS Support Message Boards

Someone recently asked me to put together a list of the ALS message board sites that I was aware of. I did so and added some editorial comments which are my personal opinions only. I share them here in case they (probably the sites more than my opinions) may be helpful in any way.

Yahoo Living with ALS Message Board

http://health.groups.yahoo.com/group/living-with-als/

This seems to be a good, reliable source for patient services information. All postings are screened and whoever does the screenings keeps things on track well. It is a simply threaded message board that does its job nicely with an active core of participants. The tone is polite and pleasant. If I were looking for help with the practicalities of dealing with ALS, this would be the first place. Effective trumps high-tech every time.

ALSTDI forum

http://www.als.net/forum/

This has the most active research board that I have seen, and it has some professional adult supervision from ALSTDI in the research area which is very helpful. Rob Goldstein of ALS TDI fields questions for their staff. Relatively few people actually participate actively on this board, but hundreds lurk daily looking for the next big thing.


PatientsLikeMe

http://www.patientslikeme.com/forum

The strength of this site is the empowerment that it gives PALS to self-report their medical data. The forum area is not highly moderated (but there are loose rules that are enforced). It can be a good source of information for those exploring off-label or unapproved treatments. One also has to be aware that opinions can run high there with proponents and opponents of the unproven.

ALSforums

http://www.alsforums.com/

This is highly moderated and used to be very Canadian in content and focus. More recently it has attracted many more participants globally. It's a site that more people seem to be finding, and critical mass is important for any message board to be effective. It now has the critical mass.

MDA Communities

http://www.mda.org/

There are a lot of tools available to people wanting to set up an online presence. The ALS forum area just doesn't seem to have enough critical mass to be the most effective source of information.

ALSA Virtual Advocacy Community

http://als.clinicahealth.com/

Be aware that ALSA staff members do not participate on this site. Many simple questions on that site go unanswered. Traffic appears to be light and it's unfortunate that it can allow patients and others to twist in the wind waiting for some kind of response from someone.


__________
There are many other sites that can be of help to those trying to deal with ALS. The list above only includes message boards where people can post questions and receive peer responses.

Most ALS organizations have Facebook presences. Until now, those are mostly used for fundraising purposes.

As ALS organizations learn how to use social media to interact more with patients and other constituents, we hope that we can expect more kinds of patient help (both from organizations and from peers) to come closer to where it is easiest for the patients to interact -- online.

And don't forget, as the classic New Yorker cartoon taught us with two dogs at the computer, on the internet, they don't know you're a dog.

If anyone has other thoughts, please chime in. The comments area below is open for business.

Feed The Hungry, Clothe The Naked, And Help Those Dealing With ALS

Global Problem, Global Solution ?

Interesting article...

http://www.eurordis.org/content/democratizing-innovation-rare-disease-research-orphan-drug-development

71 Years Ago Today

Lou Gehrig gave us a lesson in grace and courage, and he gave a terrible disease a name.

Annoy The World Into Paying Attention To ALS

This could just do it. For your next Walk to Defeat ALS, get vuvuzelas on ebay for a few hundred walkers and raise the noise level so that the world will pay attention. I can even see some news cameras wanting to cover people who would do something so outrageous and annoying as to walk through a city or a park making vuvuzela noise. It's so fitting. ALS is outrageous and annoying, too.

Nebulous Optimism Hasn't Cured ALS Yet

From a participant at the ALSA Advocacy Conference in May, 2010 --

Is There A Clue In The Goo

Common sense tells us that we will be paying a huge environmental price for the BP oil mess for decades to come. The health price may not be so obvious.

Is anyone looking at historical data on oil spills and subsequent cases of ALS? Do we have any data on people exposed to the Exxon Valdez aftermath and subsequent Lou Gehrig's Diseaese? Do we have any global reporting that would render clues on oil and water mixing into a deadly trigger for motor neuron disease (amyotrophic lateral sclerosis)? Do the layers of contractors and subcontractors in the many industries related to oil exploration and cleanup make it difficult to track environmental exposures and future health outcomes?

America is an angry nation whose waters have been fouled. Perhaps this is the time to gather some national resolve to figure out ALS and to prevent cleanup workers from paying a horrible price in ten or twenty years for the work they are doing in 2010.

Long After The Hot Air Leaves The Balloons...

...our veterans still have to deal with their serious, service-related disabilities, including ALS.

From the Flag Day Indianapolis Star Letters to the Editor --

Airport Authority disregards needs of disabled veterans
Posted: June 14, 2010
The Indianapolis Airport Authority's decision to eliminate the discount for disabled parking seemed dictatorial in that organizations with a vested interest were not notified or even consulted for input.In Indiana, our legislators authorized a disabled American Veteran license plate. This handicap plate is available for those who have served our country and have been evaluated by the Veterans Administration with a service-connected disability that impairs mobility. These veterans, who gave a part of their body, are now considered a "financial burden." It is a sad state of affairs when the Airport Authority welcomes the return of the men and women in the armed forces with balloons, pomp and ceremonies but then, once they are back, they are quickly forgotten.I hope the members of the Airport Authority are able to sleep at night visualizing a vet in a wheelchair trying to get to a pickup shelter during rain, snow or other extreme weather conditions. Happy dreams.

Mike Whelihan
State adjutant
Disabled American Veterans Department of Indiana
Indianapolis

Why is Sleepy so concerned about the cheesy behavior of the Indianapolis Airport Authority, you ask? First, Sleepy is a proud citizen of Indianapolis, a city that is an outstanding and hospitable place where we like to treat people with respect. Second, ALS is a service-related disability for all veterans who have been diagnosed . Gravity becomes an unbelievable enemy for those dealing with ALS, and travel is difficult beyond most people's wildest imaginations. Why in the world would a world-class city decide to start to save money on the backs of those with ALS by making their travel more difficult or more expensive?

Lou Gehrig's Disease is a pretty crummy fringe benefit of serving your country so that all Americans can travel freely. Our military veterans with ALS should be treated as heroes and not as cash cows for the parking lot.

Thank you, Mr. Whelihan. Thank you, veterans with ALS.

ALS -- The Disease That Is All Q and No A

On Monday the Diane Rehm show on NPR featured a panel talking about the BP oil disaster in the Gulf of Mexico. Panelists talked of liability and the pelicans and fish and engineering and government response. There were lots of questions and some actually had answers.

Then a caller asked a very interesting question. She prefaced her specific question by asking if somebody wasn't looking at the health implications of all of that oil. She said that some years ago she had spent time at the Cleveland Clinic and noticed that there were many people from Saudi Arabia who sought treatment at the ALS program at the Cleveland Clinic. She said that later she was aware of the work done in Kentucky that uncovered the correlation between military service in the first Gulf War and ALS. Those two observation made her wonder about exposure to oil being a possible factor in ALS. Nobody on the panel knew anything about ALS. Good question. Next caller, please.

So another very good question was asked. It's a question that could have huge implications beyond the immediate environmental disaster off of our shores. Will Americans be seeing in increase in ALS in the future? Will there be a BP Clinic for Motor Neurone Disease set up somewhere?

Once again, there are thousands of really good questions regarding ALS. There are no answers. That's scary.

My ALS Rage Boileth Over

Sleepy has a case of ALS rage. It started 13 years ago after I had been asked to pick up some liquid Centrum for a loved one with ALS since she read that vitamin E might be helpful. Later that same day I read in Lou Gehrig's biography that Eleanor Gehrig used to pick a certain type of greens in Central Park because they were high in vitamin E which was thought to be helpful with ALS. Over half a century later and we were still grasping at an unproven vitamin E theory. That did it. ALS rage has been a part of my life since.

Normally the rage can be channeled into very constructive activities related to awareness and advocacy.

Occasionally something hits my ALS rage button particularly hard, and the rage boils over. Today is such a day.

Take a look at these old digests. They're from a listserve that was a wonderful support mechanism 10-15 years ago. The cast of characters has changed for the most part, but the roles and theories and claims and questions are horribly similar to today's. Change the dates and much of this content could have happened yesterday.

http://home.earthlink.net/~jakesan/pages/alsdig.html

People with ALS have no good choices, so they do their best. Unfortunately we have failed to offer them better choices in the 70 years since Lou Gehrig was diagnosed and in the 70 years before that when the disease was first identified.

Patients hang their hats on hope and sometimes listen to what they want to hear.

http://www.rideforlife.com/archives/001149.html

http://www.rideforlife.com/news/stem_cell_research/als_patient_dies_after_chinese_stem_cell_surgery.html

Over the years they have sometimes viewed the drug they can't have as the next big thing.

http://www.accessmylibrary.com/article-1G1-53449780/cephalon-may-pull-plug.html

There were no good answers for ALS 140 years ago. There were no good answers for ALS 70 years ago. There were no good answers for ALS 13 years ago. There are no good answers for ALS today.

Perhaps we need to spread a little ALS rage and channel it into some global resolve to finally provide some good answers to patients so that they can have some hope that doesn't require them to roll such cruel dice.

The Ticking Clock Can Cause A Dilbertian Perspective on ALS Research

People with ALS live with a terrible ticking clock. They play out their lives like an ultimate game of speed chess.

It can change one's perspective on efficient use of time and the best processes for discovering and approving treatments. We all have to acknowledge that what we have been doing for the last century has failed to develop a cure (or even an effective treatment) for Lou Gehrig's Disease.

I'll bet more than a few people with ALS rolled their eyes when they read Dilbert this morning.

ALS Awareness Isn't Working

Would someone call a company Heart Attack Enterprises?
Would someone call a company Gastric Reflux Enterprises?
Would someone call a company Urticaria Enterprises?

http://www.startribune.com/sports/outdoors/94639959.html?elr=KArksLckD8EQDUoaEyqyP4O:DW3ckUiD3aPc:_Yyc:aUUsZ

It's Not 6000 Lost Americans... It's 6000 Lost Americans Every Year

Around 6000 Americans die annually from ALS. Every Advocacy Day we remember them... or do we really? We are good at remembering the here-and-now -- the 30,000ish people living with ALS and those 6,000ish who died during the past year. We're terrible about getting our here-and-now brains around the cumulative effect of this disease.

One idea that has been bounced around for years has been to have 6000 empty chairs present at the ALSA candlelight vigil in Washington to remember those who have died in the last year. The following year there would be 12,000 chairs and the year after that, 18,000. At some point the chair display would get so big that the people who live and work in Washington would have to pay attention. If we had started doing this when I first went to advocacy day seven years ago, we would be up to 42,000 chairs. 42,000 people who were somebody's mother or father, somebody's brother or sister. 42,000 empty chairs clogging up our nation's capital. 42,000 lost lives. Can you imagine our national resolve if that many lives were lost to terrorism or airplane accidents or tainted spinach?

If not the empty chairs, perhaps a balloon release. That would get some attention, too. Lou Gehrig died in 1941. 69 years * 6000 Americans ... almost half a million balloons.

It's not just an American problem. If we started finding ways to represent the global loss of life to ALS since Lou Gehrig died, we would be renting over 8,000,000 chairs or releasing enough balloons that the FAA would probably stop us.

Let's Have Altruism Day For ALS Awareness Once Every Year

Dear ALS 501c3 Organizations,

Lest you dismiss me as an idealist who doesn't know what it's like to have to raise funds and make payroll, please don't. I'm not.

Earlier this week I witnessed a refreshing and grand act of altruism from an ALS 501c3. I suggest that all such organizations join in a day of altruism once a year simply to raise awareness of ALS.

Main Entry: al·tru·ism
Pronunciation: \ˈal-trü-ˌi-zəm\
Etymology:
French altruisme, from autrui other people, from Old French, oblique case
form of autre other, from Latin alter
Date: 1853
1 : unselfish regard for or devotion to the welfare of others
2 : behavior by an animal that is not beneficial to or may be harmful to itself but that benefits others of its species

A caravan of ALS Association Florida Chapter staff and volunteers (including a man with ALS who accomplished more in a week than many of us healthy people will do in a lifetime) packed up the trailer and gassed up the vans and drove to Washington, DC. They had spent countless hours working out the advance details with the National Park Service, with the Navy Memorial, and with the press to make a first-class ALS advocacy display in our nation's capital. The logistics of this display are not simple. An extra carload of volunteers drove to DC simply to assist with the setup and teardown. Had I known how technically precise and how physically demanding the setup is, I would have suggested press coverage of that alone.

What does this have to do with altruism, you ask? When was the last time you attended a public ALS event when fundraising or organizational positioning weren't key components?

The Floridians had nothing to gain by this expensive field trip... except a huge amount of ALS awareness. Only a small fraction of the many hundreds of people who stopped and looked and learned about ALS were from Florida. There were people from Wyoming and Michigan and Alaska and Australia and Canada and Russia and DC and Germany and France and Illinois and Japan, but it's not likely that they'll run home and write big checks to the ALS Association Florida Chapter, nor will they be asked for anything. They were simply thanked for stopping to see the display and learn about ALS. Oh, and nobody forgets Lou Gehrig's Disease after having witnessed that display.

This ALS 501c3 invested in global ALS awareness. They never asked "what's in it for me" when they decided to chase this ambitious goal. The focus was on ALS and not "me."

I thank them. I ask all ALS not-for-profits to have a project every May that is for the sheer benefit of raising ALS awareness. Save the lists of organizational accomplishments. Let your development person work on other things. A day of altruism is good for your organizational soul.

To quote a great man who happens to have ALS and who makes this display work,
"Without awareness we won't have funding. Without funding we won't have research. Without research, we won't have a cure."

$16 Bil vs $16 Mil - What A Difference A Letter Can Make

The morning paper indicates that it may have been a typo that made the market plunge yesterday afternoon. Somebody typed $16 Billion rather than $16 Million. Pow. Things happened.

Next week ALS advocates are asking Congress for $15 Million for ALS research in the DOD ALS Research Program. Perhaps we should ask for $15 Billion so that we might get a plunge in ALS. Pow. I'm not kidding.

We Have A Message For Washington And The World

We Don't Have A Long, Long Time

I got to hear some AIDS activists from the past speak last Wednesday evening. They didn't dwell on their considerable accomplishments because there is still much to be done. They did give me a valuable glimpse into how they accomplished so much twenty years ago.

One spoke of being firm and doing what is right, rallying around a loved one and standing up for his rights.

Another spoke of needing to get our government off its governmental "butt" (his word, and a poignant one at that). Twenty years ago our government had been saying it was doing much, but it was lip service. It wasn't coming close to a meaningful commitment.

These were just-do-it people. They were articulate and clear twenty years ago and they still are today. They work using the energy of a controlled rage and a positive mission. They are not sheep. They know how to go off script.

I left that evening with a new fire for getting some things done for ALS. Our governmental butt is bigger than ever and we need to get some meaningful action for ALS.

Jeanne White Ginder and Sir Elton John had much to brag about yet they spoke only of the gift of Ryan White and the work that still needs to be done.

I learned one thing for sure -- the ALS cause needs more articulate and visible leaders on a common mission for meaningful results. Toss the scripts. Toss the celebrities lacking the rage. Toss the roadmaps. Think big. Think meaningful. Just do it.

p.s. For those who think that awareness is not critical to advocacy, here are the words of Elton John in Sunday's Washington Post: "Most important, Ryan, you inspired awareness, which helped lead to lifesaving treatments."

At First I Thought I Saw A Red Wristband...

...on the microphone. Nah.

The Big Sondheim Award Gala

Would someone please get Ms. Lansbury a free Strike Out ALS wristband?

"Piece by Piece" ALS Awareness Travels to Washington, D.C.

After traveling over 7,000 miles to more than 20 locations, the Piece by Piece Awareness Campaign will now make its first trip outside of the Sunshine State! The powerful exhibit of 150 mannequins representing people who have been stolen “piece by piece” by ALS will appear in Washington D.C. for The ALS Association’s National ALS Advocacy Day and Public Policy Conference.

Hundreds of ALS patients, families, and advocates are making the trip to Washington for National ALS Advocacy Days. The Piece by Piece exhibit will complement their advocacy efforts, giving lawmakers a gripping image of the devastation caused by ALS.

You can get involved in this fantastic advocacy and awareness opportunity.

Click a button below to do your part.

You Know We Will Have Arrived...

...when there are more pages on public policy than on restaurants.

In the meantime, here's interesting information on ALS Advocacy Day --

ALS Advocacy Day Rules Of The Road

Be Ready With The Waldo Defense

Are you going to ALSA Advocacy Day activities in Washington in May? You might want to print a copy of the article (link follows) from the Motley Fool and be ready to play a little "Where's Waldo" with a legislator (especially a difficult one who doesn't want government interfering with ALS).

http://caps.fool.com/Blogs/ViewPost.aspx?bpid=371036&t=01000849893988078894

It shows 42 future leading companies from a meeting of leading-edge biotechs. This is the private sector at its best, using emerging technologies to solve significant health problems.

Find someone working on ALS in that group.

So if you call on a legislator who says that ALS is not a problem that the federal government can or should pursue, simply hand him or her this article and say, "Where is ALS on this list?" It's there... once. It's like finding Waldo in a circus of priorities that seem more profitable (or perhaps easier) to the private sector.

I rest my case.

Why Not Take ALS As $eriously As Our Hoops?

Todd Lickliter was fired as Nebraska basketball coach after three seasons. The alumni and fans and students grew impatient after another losing season. They were willing to spend a huge sum of money in a struggling economy to send him on his way and terminate his contract. He did nothing illegal or immoral. He simply didn't win enough games.

According to Bloomberg, public colleges and universities have spent $79.5 million in severance payout money to send coaches packing in the last three years.

http://www.bloomberg.com/apps/news?pid=20601079&sid=aObnK1QzWXcQ

Those are just the public institutions in their study. They don't count the added millions that private universities have spent in the same pursuit of winning at sports (and I know one well that specializes in having one football coach for the price of three).

Compare $79.5 million dollars to what we have spent on ALS research.

Compare three years to the 141 we've spent in losing season after losing season trying to find the cause and cure for ALS.

Unfortunately the students in the ALS scenario don't survive to be alumni.

Is www.FIREtheWayWeHaveBeenAttackingALSfor141Years.com available?

Mothers' Day Is Never The Same After The ALS

ALS changes Mothers' Day. Brunches give way to meals that do not require travel, buffet lines, and the motor neurons that are required to eat successfully.

Millions of daughters and sons who have lost mothers to ALS would love to be able to send one more box of candy or one more vase of colorful flowers.

I offer a suggestion for those who miss those old brunches and flowers and family gatherings. Since things are never the same after the ALS, please consider a way of paying tribute to Mom and doing some good so that ALS might not ruin Mothers' Days for others. On May 9, Mothers' Day, the traveling Piece by Piece exhibit will be displayed in Washington, DC, directly on Pennsylvania Avenue, midway between the White House and the United States Capitol Building. Sponsoring a mannequin with your Mom's name will honor her and will help raise some national awareness and conscience about a disease that has devastated far too many families.

Your mother's tribute mannequin will then move to the shadow of the United States Capitol Building on Tuesday, May 11, when hundreds of ALS advocates will call on legislators to seek research funding. And it will go on and on as the display continues.

It's something that Mom might like to be a part of.

Please click here for more information.

A New Way - Advocate for those with ALS

Regardless of what they call this disease in your part of the world, please take a moment on the first weekend of May and pray in your own way for those dealing with ALS.

For your consideration...www.wehaveaprayer.org

We Learned Something Today From Another "A" DIsease

This morning there was a letter to the editor in my local paper from a national board member of the Alzheimer's Association. The letter was emphasizing the need for added federal funding for research (sound familiar?). The seal-the-deal line was that for every dollar the federal government spends on Alzheimer's research, it spends $2.50 on patient care.

I turned the page with two thoughts --

• The federal research::care ratio makes a compelling case for increasing research spending, and I'm sure that ALS has a ratio that is even more lopsided than Alzheimer's.
• Organizations need leaders who are ready, able, and willing to write letters to editors and keep their causes in front of the public. Board and executive staffs are full of talented and eloquent people. Please speak up!