Sunday, September 30, 2007 - Where There's A Will, There's A Way To Pull That Lever
ALScounts knew a PALS who took her voting privilege seriously. One November morning she awoke, spent most of the morning on the chore that PALS know as getting dressed, made arrangements to be driven to her polling place, managed to walk in helped only by a neck brace and her elderly husband's arm, identified herself and signed in (writing was a struggle), and entered the booth alone and pulled the levers of her choice.
Just ten weeks later she hit the ALS wall and died... but she had voted.
The people at the polling place mentioned how impressed they were at the effort that a 78-year-old woman made to vote. Fortunately they knew that she had more marbles than the rest of us put together even though her ALS-speak could have made her sound sloppy drunk to a voting inspector who did not understand ALS.
ALScounts thinks that we need a montage of all the ways that PALS can and will vote despite their difficulties. The images would include polling places and technology and absentee ballots and barriers and motivated PALS. Pictures of voting PALS overcoming obstacles and marking ballots and exercising their right to vote in many ways would make a twofold impression -
-- They are smart and clever and motivated and overcome huge obstacles to do difficult things that the rest of us take for granted.
-- They will vote.
Are there any filmmakers out there who might like to put together the many faces of ALS voting? It could send a powerful message.
Friday, September 28, 2007 - So You Really Want To Be President?
There are six United States Senators and four Members of Congress among the announced candidates for the United States Presidency.
Here are their current positions on cosponsorship of the ALS Registry Acts --
Anyone living in one of the primary states where the candidates are trying so hard to make their marks is encouraged to ask the question publicly -- What is your position on the ALS Registry Act and if you don't support it, why in the world not?
Yesterday we learned that the House bill is on its way to the floor for a vote. That was promising news! We're making progress, but we need to get these folks on board for the Registry Act and for the cause in general. They must understand that it's time for some national resolve to figure out ALS!
Monday, September 24, 2007 - We Need Somebody Big -- "First-Name" Big!
There is a Yahoo group dedicated to ALS advocacy topics. You can access it via www.alsadvocacy.com .
A few weeks ago one of the contributors there wisely said that we need a big face for ALS. Here are some of her words --
This idea of "getting a big face" for ALS has been eating at me for months. I'm a fairly good writer, and I've written several letters. Obviously, I haven't hit on "the hook," so, maybe if we pool our ideas and come up with a letter that just begs for a reply we can accomplish something. ...to let them know we're not looking for money - we're looking for exposure... We've got to get word outside the ALS community and into the non-ALS community. With people all over the world suffering from with this misery - sombody's gotta know somthin'. So - HELP! We can do this.
We've had some pretty big faces who have had this disease.
We had one of the greatest baseball players of all time who gave his name to this disease, but he died. We had David Niven. There was nobody bigger in in the entertainment world, but he died. We had Chairman Mao. There was a global name who was really big, but he died. We had General Maxwell Taylor who was big in U.S. military affairs, but he died. We had Dimitri Shostakovich who was huge in the music world, but he died. We had Morrie Schwartz who taught us how to live and die, but he died. We had Catfish Hunter who oozed with baseball talent and big charisma, but he died.
Our advocate is right. We need somebody big and healthy to take up the cause and help ALS attract media and attention. We need somebody big who is willing to spread the word about a disease that isn't very pretty. We need somebody big who will stick with us when another promising research project or legislative effort goes kaput. We need somebody big who realizes that a country that sends a man to the moon can figure this disease out. We need somebody who can become outraged that a killer disease has been ignored for so many years. We need somebody big who is tenacious and smart and can raise the noise level about ALS.
We need somebody big... maybe even "first name" big. Oprah? Tiger? Bill (the one married to Hillary or the one married to Melinda... either one could do the job we need)? We're not asking for your money. We're asking for your priceless ability to make people listen.
We need to start asking big faces for their help.
Thursday, September 20, 2007 - It Has Been A Good News Week
ABC News ran the Nightline segment on the young family dealing with a mother's ALS. It was beautifully done. We learned about a family facing tough aspects of living and dying during the years that were supposed to be so carefree. We learned about the important things like making tacos. We learned about the challenges of ALS. We learned about a disease that has stolen lives for far too long. We learned about a mother with ALS who was determined to be standing when she met her Senator in Washington. Many of us have seen mothers of all ages who face their ALS with that same courage and determination.
Please visit http://abcnews.go.com/Nightline/story?id=3615033&page=1 and see the story and the comments. That segment elicited over a hundred comments, many of which came from people with ALS and those who have lost loved ones to ALS. They speak volumes about the size and scope of the problem we know as ALS.
We owe thanks to Aimee and her family who made that Nightline piece happen. It helped the cause immensely.
We also learned this week that support in the Senate continues to gather (albeit far too slowly for those with the ALS clock ticking) for the ALS Registry Act. We hope that there is more good news coming soon that we will have an ALS Registry and that data on all of our mothers who have had ALS won't continue to be lost clues.
Thanks, ABC News. We hope you'll find more interesting stories in the mystery disease that gets so little attention.
Monday, September 17, 2007 - Maybe They'll Stop Asking My Age
Many years ago when ALScounts was in third grade, our arithmetic teacher taught us that if you know the date when a person was born, you can figure out his or her age. We little urchins quickly figured out any secrets our parents were harboring about their ages.
Today we continue to go to physicians' offices and are incessantly handed clipboards with antiquated, poorly reproduced pastel registration forms that ask for our dates of birth and our ages. That seems to ALScounts as a big clue that my medical records are not prepared and stored with the same care that General Motors uses to keep my automobile maintenance history and that Costco uses to understand my shopping habits.
There is an effort afoot led by some major employers to move to a web-based system of health records ( www.dossia.org ). They employers are some significant ones (Intel, Wal-Mart, AT&T, Sanofi, Applied Materials, BP, Cardinal Health, Pitney Bowes). ALScounts has a theory that sometimes the most effective standards are set by dominant products rather than a lot of regulations. Perhaps this group will lead to a quality product that sets the standard for retaining quality medical histories.
Wouldn't it be wonderful if such a standard would include an opt-in feature for people who want to be included in studies or in a registry for certain disease categories? If such an information framework contained sufficient numbers of people and if PALS could set an indicator to include them in CDC studies, we will have made a huge leap toward getting quality information about ALS.
What's good for efficient business practice for industry may also lead us to the information that will unlock the clues to ALS.
Monday, September 10, 2007 - What Ever Happened To The Absent-Minded Professor?
When ALScounts was in college, our universities were havens for intriguing minds. Many professors would work on interesting projects in order to further their academic disciplines... or simply to discover new and interesting things. The eccentricities of these scientists and academics would cause students to roll their eyes, but there was something amazing about pure intellectual curiosity in action. There was nothing practical about them. They drove rickety cars, sometimes adorned with peace symbols and bumper stickers holding the bumpers on, and their social graces weren't a priority. They were simply driven by their curiosity and their love of their academic fields.
Today our universities are a lot more focused on the bottom line. Licensing agreements and pursuits of discoveries that will be profitable to the institutions are an important part of the business of higher education. Can you imagine what our schools today could have done with the profits on Flubber?
In this morning's news, ALScounts learned our public universities spent over $30 million last year lobbying on Capitol Hill. Our local, tax-supported universities have spent the salaries of many absent-minded professors on lobbying.
ALScounts thinks that it's not likely that some completely altruistic university researcher is going to be encouraged to tinker with an interesting compound that seems to do something to help the failing motor neurons of ALS. It's not likely that an ivory tower academic organization is going to take up the cause of a disease that is perceived as rare when there are licensing rights to be earned on discoveries that will serve the masses.
Our lack of data keep us from building that businesss case needed to get our universities' attention. Our ivory towers are bottom-line businesses now. Perhaps our legislators will keep that in mind when the lobbyists from grand old ivy come calling. We need some numbers on ALS so that they will see some value in pursuing the research into ALS. Professor Ned Brainard isn't there to help us these days.
Tuesday, September 4, 2007 - If Only ALS Came With A Big Dose Of Immunity
Sometimes we forget that people with ALS are not magically immune to all of the other serious diseases that beset humans every day. We have no reason to believe that they are immune to diabetes, Alzheimer's, strokes, heart disease, bi-polar disorder, COPD, cancers, macular degeneration, kidney disease, arthritis, or influenza.
The ALS certainly becomes front-and-center once someone is handed the diagnosis. Because of the sheer difficulty of getting to the doctor's office (and being understood once there), some PALS don't get the routine preventive medical care that can keep a cancer from getting out of hand or an increasing cholesterol level from unleashing a heart attack.
How many people with systems compromised and complicated by the ALS meet death when facing one of these other often preventable or treatable diseases?
Certainly this makes the numbers based on death certificates even more challenging to understand. If we had a good trail of information on the living PALS, it would certainly make a clearer picture of their lives and their deaths. If we had better healthcare delivery for PALS, it could also help more of them be alive for that glorious day when the cure is found.
Saturday, September 1, 2007 - Here's An Arresting Thought
ALScounts has been reading about how police departments are finding e-ticketing to be extremely effective. It makes better information, it saves costs, and it saves officers' time. One of the first steps in issuing an e-ticket is for the officer to swipe the driver's license using a small unit in the squad car or on the motorcycle. Voila. Default information is entered and pertinent history appears to the officer. Law enforcement and courts are more effective thanks to some now readily available hardware and software that even impecunious cities can afford.
Wouldn't it be cool if a PALS could simply have his or her driver's license voluntarily swiped on each visit to the doctor in order to have some basic information captured in a central repository?
...or, we can't get a registry soon, maybe we should ask our police departments to put some speed traps in front of ALS clinics.
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................