Friday, June 29, 2007 -- Google Delivered More Than We Wanted
ALScounts has some standing daily Google searches for news items on "amyotrophic," and "Gehrig's," and "ALS." From time to time an extraneous story comes up with a person named Gehrig in the news for a marriage or an arrest or a promotion. Every so often, stories about Montreal football come up when the writer has referred to the team as The Als rather than The Alouettes. ALScounts ignores those and reads on to find the news items about the disease we are fighting.
Yesterday a story with a double-Google-whammy appeared. It was Montreal Als story that was not to be ignored. Tony Proudfoot, a former Alouettes star and a broadcaster has ALS.
What is it that makes athletes so prone to ALS? Is it the activity levels? Is it the turf chemicals? Is it head trauma? Is it the uniforms? Is it that we just pay more attention when people of great athletic achievement receive this ironic diagnosis?
There are a lot of questions. It's time for some answers!
Wednesday, June 27, 2007 - Lightning Strikes Again and Again and Again...
This morning ALScounts heard on the news that storms last night caused some lightning strikes at area homes The newscaster also gave a very nice coverage of Lightning Awareness Week this week. http://www.lightningsafety.noaa.gov/
We learned that lightning kills 62 Americans every year. There are large government programs to teach our children and adults how to prevent injury from lightning. We have expensive siren systems on our golf courses to help people know to take precautions. Leon the Lion teaches kids to get out of the pool. NOAA is working hard to save those 62 lives, and rightly so. Fortunately we know how to prevent lightning deaths and NOAA does a good job of showing us how to be safe.
Your odds of having lightning be your cause of death are around 1 in 79,746 according the the National Geographic. Your odds of having ALS be your cause of death are closer to 1 in 1,000. Maybe if ALS hit people's homes with a giganic flash and terrifying noise, then the rest of us would get the idea that we need to do more in educating people to the public health danger that quietly kills thousands of Americans every year. We need to sound sirens and educate our youth and get on the news and have a roaring cartoon lion to get the word out about the danger of ALS. We need big posters with famous golfers that say, "ALS Kills!"
Monday, June 25, 2007 - What's Good for the Goose is Good for the Gander!
David Hyde-Pierce was on This Week yesterday, announcing the kick-off of an Alzheimer's action effort to engage one champion for every Alzheimer's victim. Those champions will be activists raising the awareness of the disease through action, through websites, through donations, and through simple things like t-shirts that will help people pay attention. Alzheimer's has struck his family cruelly and the cause is blessed to have someone of his stature (and the recent Tony Award doesn't hurt) at the front of their campaign.
ALScounts has often thought of ALS as a kind of cruel mirror-image of Alzheimer's. With ALS the mind stays so sharp while the body is picked apart piece by piece.
ALS is also a disease that needs champions to act on behalf of their loved ones.
ALScounts has often thought of all the positive things that happened to address AIDS after Act Up started acting up. Unfortunately ALS makes it very difficult for the PALS and CALS themselves to act up. We who have been left behind and those aren't on the front-lines of caregiving living PALS owe it to our loved ones to keep their stake in the battle alive. This disease that has been assumed to have few living patients leaves a huge wake of widows and widowers and orphans and friends. We in the wake need to wake up the echoes and act. If we start acting in a positive and unified manner, the world will soon sense that this is a disease that needs to be dealt with! We can learn from the other "A" diseases.
Sunday, June 24, 2007 - We Have Another Hoosier Co-sponsor in the House!
Thanks for Congressman Baron Hill for adding his name to the list of co-sponsors of the ALS Registry Act.
Wednesday, June 20, 2007 - We Have a Co-Sponsor in the Senate!
Senator Evan Bayh has signed on as a Co-Sponsor of the ALS Registry bill in the Senate. Thanks, Senator!
Tuesday, June 19, 2007 - It's Lou Gehrig's 104th Birthday.
Picture the world in 1903 when Henry Louis Gehrig was born. The automobile wasn' t everywhere. There had not been a World Series. Baseball was just getting started. New York had a small team called the Highlanders. There were no airplanes except for the one that the Wright Brothers were about to send on a flight of 120 feet.
In 1869 Jean-Martin Charcot identified a neurological disease that was given his name -- Maladie de Charcot. Little did the Gehrig family in their joy in 1903 realize what greatness and what tragedy awaited. Once Lou was diagnosed, do you think that his family ever wondered why Maladie de Charcot had not been cured since it had been discovered 70 years earlier?
We Americans usually start the clock on ALS with Lou Gehrig. We are grateful that he gave a memorable name to the disease and a life of achievements that amplify the terrible nature of Maladie de Charcot.
Surely the loss of a beloved American baseball icon would have moved our country to figure out the disease!
Airplanes have improved a lot since 1903. Baseball is a much more technically advanced sport and business since 1903. We have sophisticated automobiles and iPods and cell phones and send people to outer space. We have convenience foods galore. We can figure out ALS. We simply need to make it a priority right up there with baseball and mp3 players and HDTV and wonderful foods that we can cook on our mega-grills.
There was an urgency in 1903 that perhaps we didn't realize. There is clearly an urgency in 2007.
Monday, June 18, 2007 - This Season Ticket Isn't A Hot Item
In this age where people spend huge amounts on tickets to a special game or sporting event, please think about our football stadium on the "It Doesn't Add Up!" page on this site.
When Lou Gehrig died in 1941, his seat in that stadium went to someone else. And that person courageously faced ALS and died and the seat when to yet another person. At least seventeen vital and beloved human beings have been assigned to Lou's seat by this grim reaper of a disease. Seventeen others have sat in the seat to his right, and seventeen others have sat in the seat to his left.
Next time you pay for a terrific season ticket or pay an admission for a special ballgame or race, please remember that the battle against ALS could use some help from your pocket, too. ALS gets very little support from the deep-pockets of pharmaceutical companies that have a natural interest in diseases that they perceive as having a bigger payoff for them. We ordinary individuals have to take up the slack. There are several 501c3 organizations dedicated to ridding the earth of ALS. Please support them. We need to get all Americans to care as much about ALS as they do about the Superbowl or the Nextel Cup!
Friday, June 15, 2007 - People With ALS Need the Support of Our Entire Crew of Legislators If They Are To Win Their Race!
We have updates on Indiana legislators who have signed on as co-sponsors of the registry legislation... and those who still need to join the team...
The following Representatives have signed on as co-sponsors Dan Burton Julia Carson Joe Donnelly Mark Souder
Neither Senator Bayh nor Senator Lugar from Indiana has signed on as a co-sponsor yet
We also still need support from Representatives Visclosky Pence Buyer Hill Ellsworth
Wednesday, June 13, 2007 - Peanuts Get More Respect than PALS?
In the March, 2007, emergency funding act passed by Congress, a lot of basic food groups were well taken care of.
The President asked for $105 billion for the war, but we all got some additional bonuses -- $74 million for peanut storage, $25 million for spinach growers and $100 million for citrus growers.
Nobody respects the importance of good agriculture more than this Hoosier, but why is it so difficult to get Congress to deal with a disease that kills thousands of Americans annually, including an inordinate number of those who have volunteered for military service so that the rest of us might be safe at home? We're not even talking spinach money.
Thursday, June 7, 2007 - A Month is Special
ALScounts went live one month ago today. In that time, website traffic has been more than our wildest dreams. ALScounts hopes that some have learned and have gained a spirit of activism in the battle against ALS. Please take a moment today and say a prayer for PALS and their caregivers. Before your amen, please ask what you're supposed to be doing to help in the fight... and please listen to the response... and just do it.
One month means another electric bill, another cell phone bill, another dose of heartworm medicine for the dog. It also is almost three percent of the remaining life expectancy for the average newly-diagnosed PALS. We all need to put our months to better use to stop ALS.
Monday, June 4, 2007 - Dots Not All! This idea of collecting the dots so that we can connect the dots is catching on. Link
Sunday, June 3 - Count PALS and Save!
Building on ALScounts' June 2 thoughts, here's what ALScounts would do with $1.5 million.
Offer a free Costco card to every diagnosed PALS in the country with the caveat that we could ask Costco to provide us some reports. It's not a registry, but I'll bet we could come close to getting a good headcount and we certainly would find out where they're living. And the PALS could enjoy those bargains on huge packages of everything... either in the stores or online. If the $1.5 million ran out, we would have proven the point that there are indeed more than 30,000 PALS in the country. Maybe Costco would even give us a discount on that big package of new members.
Saturday, June 2 - Do You Have Your Fresh Idea Card?
ALScounts went to the grocery store today. Our Fresh Idea Card tells tells the grocer that one of the dogs has switched to Iams Weight Control Biscuits. Our grocer also knows that we love asparagus and pineapple... but only when they are on sale. ALScounts then stopped at Costco where the information czar behind the scanner learned that we needed popcorn and that the grocery store must not be having a sale on pineapple this week.
It sure seems ironic that our low-margin grocery operations can afford to keep better information on shoppers than our healthcare system keeps on people with ALS.
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................