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.

Friday, June 25, 2010

This Is One Interesting Trip Report

A man with ALS captured his experiences and the ALSA Advocacy Conference and Day. Be sure to watch both segments.

Part 1
http://www.youtube.com/watch?v=xjZYiuIiSUg
Part 2
http://www.youtube.com/watch?v=G7ubVGbq5xo

Advocacy Action Alert From Easter Seals

For your consideration and action...

http://bit.ly/anrEd2

Senate vote on critical services for people with disabilities – send your letter today! The Senate will soon vote on legislation that will make a huge difference in the lives of people living with disabilities. States count on an influx of Medicaid money from the federal government – without this money, states will be forced to cut benefits for people with disabilities and chronic illnesses that rely on Medicaid for health care. People should not have to go without the services that allow them to lead healthy, independent lives. We can't afford to let that happen. Make sure your voice is part of the debate.

Rick Telander Tells An Important American Football Story

What football did for us and ... what football did to us

... But even that's not enough for Mary Hilgenberg, Wally's widow, who resides in Florida. She believes that CTE can be the catalyst for Lou Gehrig's disease, that concussions, even mild ones, set the stage for brain horrors down the road.
''I believe Wally died of CTE that caused ALS symptoms,'' she says. ''There were days as a player when he didn't know he'd played in a game. I know when the big concussion happened -- 1968. He was out cold. Two players dragged him off the field -- it was on national TV -- so the Vikings weren't charged with a timeout. After he died, Dr. McKee saw that on his brain.'' ...


Perhaps it's time for some serious off-season study. Perhaps it's past time.

Wednesday, June 23, 2010

This Has To Be The Deal Of The Century




If you thought that there are no real bargains on the internet, think again.
We found one for you today. You can spend a little (very little) and have a chance to make a big difference in ALS awareness.

Here's the deal. There are some very nice buttons that raised a ton of ALS awareness in Washington, DC. They were conversation starters. Advocates (young and old) and legislators wore them. They got attention. They can still get attention. The ALS Association Florida Chapter is selling them online while they last for $1 each... no extra handling or shipping fee. $1. That's all. You, too, can raise awareness. Buy a dozen and give to friends. Buy a bunch for a youth group. Pin one on your beach bag. Pin one on your rollerboard and let people at the airport see it. Carry a few extras to give to people who ask about them. This is simple. This is inexpensive. This is effective advocacy.

Secure online ordering and excellent customer service guaranteed --
http://webfl.alsa.org/site/PageServer?pagename=SP_estore

The t-shirts are nice, too. They are high quality and definitely attract attention.

Splurge. We need to wear our cause in public.

Sunday, June 20, 2010

Will The Media Start Asking What The Red Wristband Is About?


Thank you, Senator Murkowski. The spirit of ALS awareness just hit the Sunday talk shows thanks to you.


Wednesday, June 16, 2010

Wanted! A Working ALS Registry


This was a nice surprise from the MDA --
Representatives of the Agency for Toxic Substances and Disease Registry (ATSDR) within the Centers for Disease Control and Prevention (CDC) will lead a webinar for the MDA ALS community. Following the passage of federal legislation, a National ALS Registry is being built by ATSDR; please join us on Tuesday, June 22, at 2:00 p.m. EDT, 11:00 a.m. PDT, for an overview of this initiative.

Date and Time: June 22, 2010, 2:00 p.m. Eastern Time; 11:00 a.m. Pacific Time
Event address for attendees:
https://mdaevents1.webex.com/mdaevents1/onstage/g.php?d=664792112&t=a
Event password: MDAwebinar2010
Call-in toll number: (650) 429-3300
Teleconference Access code: 664 792 112
Log on using the event address link provided above. Once you are logged on, phone in by calling (650) 429-3300 and enter the Access Code and Attendee ID number provided when logging into the event. Normal long distance phone changes will apply to the call.
_________________________
Some information will be welcome since it seems like it is taking an eternity to have a delivered and working ALS Registry. Every month that it takes means that we lose the clues of over 500 Americans who die from ALS. Every month.
Since the Agency for Toxic Substances and Disease Registry is in charge of this effort, we hope that the BP oil disaster won't distract from the ALS Registry but might actually move it up the priority ladder.
Many of us will be listening on June 22 and are grateful for this opportunity.

Monday, June 14, 2010

Have You Ever Known Anyone With ALS?

That's a good conversation starter when talking to someone about ALS.

When people say they don't, I always follow up with the question, "Do you remember Tom Watson's caddy?" Nine times out of ten they do, and that story helps bring ALS to life for them.

Warm up the television. The Golf Channel is helping to keep a wonderful story of friendship, golf, and ALS alive... tonight... don't miss it.

http://www.thegolfchannel.com/tour-insider/golf-channel-chronicles-bruce-edwards-life-36890/

Thursday, June 10, 2010

We Need More Diane Rehms

On Monday, the Diane Rehm Show on NPR featured a panel discussing the BP oil disaster in the Gulf on Mexico. The discussion hit many aspects of the situation -- liability, environmental impact, stopping the gusher, cleanup, coordination, etc.

A caller initiated a question about the health implications, and she focused directly on ALS. She recalled having seen many people from Saudi Arabia seeking ALS treatment at the Cleveland Clinic. She also recalled the work done in Kentucky that shone light on the vastly increased incidence of ALS among Gulf War veterans. Her question -- was anybody looking that the possible connection of oil exposures to ALS?

The panel didn't know, but we found out today that once a good question is asked, Diane Rehm doesn't go quietly without some answers.

Today she conducted a very informative interview with Coast Guard Admiral Thad Allen, the head of our government's response to the oil disaster. http://thedianerehmshow.org/shows/2010-06-10/coast-guard-admiral-thad-allen The topics of her questions ran the gamut, and finally the topic of health came up again. She honed right in on the ALS question that her caller had asked on Monday. She had not forgotten. She obviously realizes the high stakes of a possible ALS trigger. She pressed for an answer. Admiral Allen did not have an answer, nor was he aware of that question having been asked previously, but he promised to pursue it. As a member of the U.S. military, he has a personal vested interest in learning more about ALS... http://www.alsa.org/files/pdf/ALS_Military_Paper.pdf

As our country deals with the oil catastrophe, perhaps it will add a little fuel to the fire to have the CDC deliver a working ALS Registry sooner than their original timetable (which has been excruciatingly slow) http://wwwn.cdc.gov/ALS/ALSTimelines.aspx We have a very good and immediate reason to start collecting data on ALS cases right now. The fact that the branch of the CDC that is working on the registry is the Agency for Toxic Substances and Disease Registry would make you think that the increased oil exposure that so many Americans are currently receiving would be of potential concern.

Thank you, Diane Rehm, for pressing for answers. Since nobody has been collecting comprehensive data on ALS, we need to pay attention to questions and press for answers. The stakes with this disease are a matter of life and death... and a difficult death, at that.

Sunday, June 6, 2010

Here's A Horrible Football Fact




http://www.cqql.net/msu-1966.htm

In the famous 1966 10-10 tie between Michigan State and Notre Dame, each team had a player who developed ALS.

MSU, #11, Charlie Wedemeyer
ND, #74, Pete Duranko

Bubba wasn't the one to fear. It was Lou Gehrig's Disease.


Beating Joe Louis Was A Piece Of Cake Compared To ALS

Interesting background on Ezzard Charles, his career, and his ALS symptoms...

http://www.gwinnettdailypost.com/home/headlines/95706489.html

Wednesday, June 2, 2010

June 2, 1941

So much has improved since 1941 --
















































































Except the outcome for a person with ALS --