Wednesday, June 30, 2010
Friday, June 25, 2010
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.
... 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.
Thursday, June 24, 2010
Wednesday, June 23, 2010
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 --
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
Wednesday, June 16, 2010
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.
Monday, June 14, 2010
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.
Thursday, June 10, 2010
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
Thursday, June 3, 2010
"He hated instant replay. 'They should just play the game...' "