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.

Saturday, October 30, 2010

The Best Predictor Of Future Behavior Is Past Behavior

That's one of those wise parenting expressions that may also be helpful as you consider who will earn your vote on Tuesday.

Here is a link to the members of the House of Representatives who were supportive of the ALS Registry Act as cosponsors several years ago.
http://capwiz.com/alsa/issues/bills/?bill=9776086&cs_party=all&cs_status=C&cs_state=ALL

Perhaps this information will be helpful as you make your decisions and exercise your right to vote.

If you know people who have participated in ALS advocacy day in Washington, you may be able to get some interesting insights from them on how they were received in their elected officials' offices and whether their modest requests for registry funding or ALS research received support. Advocacy day visits are where the rubber hits the road for ALS. Those expensive political ads with the Congressperson's family and dog and hugs mean nothing if you've ever been brushed off by a staffer who didn't want to listen. Those ugly ads (always with the most unflattering pictures) about gotcha voting histories mean nothing if you've ever had a good meeting with an elected official who listened and supported your modest requests for ALS research.

There are many important problems that our country faces. ALS is one that we don't face enough. Please consider ALS as you make your decisions and exercise your right to vote.

Wednesday, October 27, 2010

Voting Is A Right

Next week we get to exercise that precious right.

People with ALS have special challenges in getting to the polls and in marking ballots. ALS steals much from people, but it cannot steal that right to vote.

Last week I inquired of the PVA about voting rights for people with physical challenges. They were kind enough to send this very helpful response --

There are plenty of resources to help people to register and vote even if they have troubles with disability or a chronic condition.

First of all a person has the right to have a person of their choice in the voting booth with them. They are also allowed to take assistive technology into the booth if it helps them communicate and or cast the ballot. Poll workers in general are aware of disability issues and have been trained over the years, but you can still find a few "bad apples" who are not sensitive to the issue. Assertive self advocacy in a non confrontational way is always best at expressing your rights.

Please look at the below links to find out more info about accessible voting:

http://www.eac.gov/

http://www.aapd.com/

http://www.ada.gov/

http://www.ada.gov/votingchecklist.htm

Thanks to the Paralyzed Veterans of America for the help. Veterans have given much so that we might have the right to vote, and we all should remember that next Tuesday.

Saturday, October 23, 2010

Watch The Video - This Is ALS

It races on and you can't stop it!

http://www.wthr.com/story/13373864/racing-team-member-fights-als-battle

Listen to the message carefully. He was fine in December. Fine. On top of the world and healthy.

This is ALS.

Wednesday, October 20, 2010

That's One Small Step For Man, A Giant Leap For Mankind

The U.S. National ALS Registry is open for business.
All people in the U.S. with ALS are encouraged to register themselves at https://wwwn.cdc.gov/als/AboutRegistry.aspx
It has been a long time coming. Perhaps some smart person will now be able to connect the dots. At least we are collecting them now!
Thanks to all who worked so hard to make this happen. It has been disrespectful of those who have died from ALS that we did not retain their clues. That changes today.

Monday, October 18, 2010

This Is Big News From the NFL and the NFLPA Regarding Players With ALS

From the Washington Post this afternoon --

http://views.washingtonpost.com/theleague/nflnewsfeed/2010/10/nfl-union-to-provide-coverage-to-retired-players-with-als.html


NFL, union to provide coverage to retired players with ALS

The NFL has expanded its coverage for former players under its dementia plan to provide benefits to retired players who suffer from amyotrophic lateral sclerosis, or ALS.

The league and the NFL Players Association agreed to the change and announced it Monday in a joint written statement."We are pleased to jointly expand this financial resource that will improve the quality of life for suffering former players and alleviate the financial drain imposed on their families by this terrible disease," the league and union said in their written statement.

According to the announcement, players will qualify for benefits without regard to causation, as with dementia benefits. Eligible players will receive as much as $88,000 annually for institutional care, as much as $50,000 per year for home care plus costs for certain medical services, equipment and medication, according to the announcement.

The NFL's plan for dementia benefits is called the "88 Plan" after former tight end John Mackey, a member of the Pro Football Hall of Fame. Mackey's wife Sylvia expressed her approval of the new benefits."I think it is absolutely wonderful and very deserved," Sylvia Mackey said by telephone. "I have had wives call me in the past and tell me their husbands were suffering from ALS and they could not understand why they were not covered. It is needed."

According to the announcement by the league and union, the plan has awarded $9.7 million toward the care of 132 former players since its inception in 2006.



Finally they are paying attention!

Here is our list of NFL players stricken with ALS. Please let us know if you are aware of others.

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg
Kevin Turner


Saturday, October 16, 2010

Perhaps It's Time To Fire Up Some Attitude!


How would it be to see 30,000 American wheelchairs sporting bumper stickers that remind everyone (and people will stare at bumper stickers on wheelchairs) that these folks have their marbles and will exercise their right to vote and are a force to be heard. Perhaps a big public display of attitude might be just what this country needs to start paying attention. Besides, those candidates pay a lot more attention the 51 weeks before an election than the week after.

...and if any legislator fluffs a constituent off at Advocacy Day, this would be a good sign for him or her to see as the wheelchair leaves.

It is time for some major attitude.


Friday, October 15, 2010

This Is Huge News From Canada

http://www.ctv.ca/CTVNews/Health/20101015/veterans-als-101015/

The Canadian Press
Date: Friday Oct. 15, 2010 8:36 AM ET
OTTAWA — The federal government is boosting support for veterans suffering from Lou Gehrig's disease.

Veterans Affairs Minister Jean-Pierre Blackburn is slated to announce later today that veterans suffering from amyotrophic lateral sclerosis, or ALS, can now receive disability benefits, treatments and home care support they may not have been eligible for before.

Sources tell The Canadian Press all known cases will be covered and families will be eligible for some support.

Prime Minister Stephen Harper told an interviewer last month that officials have been made aware of concerns over how veterans with ALS may be handled.

He said the issue would be addressed "in the not-too-distant future."


This is not only important to the veterans, but it also raises the problem on the worldwide radar. Now if someone would only do more studies on more nations' military veterans to see if increased ALS incidence is an American or North American phenomenon... or something else...

Monday, October 11, 2010

As We Approach The Mid-term Elections, Please Ask Questions

Hundreds of Americans have made the ALS advocacy trip to Washington. Many have met huge accessibility and caregiving challenges to go there to ask for relatively modest federal funding for ALS research and for a registry.

Sometimes a Congressperson or Senator will sit down with the advocates in person and will really listen. Sometimes the appointment is delegated to a health assistant who listens and passes the message along. Sometimes the appointment is fluffed off by a health assistant who is watching the clock for lunch.

ALS is just one issue among many that voters need to consider, but it's an important one. It's a matter of life and death for the tens of thousands of Americans dealing with the quickly ticking ALS clock. It's a matter of respect for our veterans who risked their lives for us only to have a delayed, terminal disease as a fringe benefit for all they gave. It's a medical concern for every American. It's a respect-life issue. It's important.

As candidates spend more money on political advertising that we could ever wish for ALS research, please take a moment and ask some questions of candidates before you vote.
  • Will you support medical research funding for ALS via the ALSRP program at the DOD?
  • Will you support funding for the ASTDR ALS Registry at the CDC?
  • Will you support the federal government working with us to get to the bottom of ALS in veterans?
  • Will you support veterans' benefits for those with ALS?
  • Will you meet with us when we come to Washington?
  • Are you willing to listen and learn?
There is a big difference in attitudes about ALS and the role of the federal government, even within parties. There is a big difference in attitudes about meeting with average citizens and listening and learning.

This is a good time to ask candidates and evaluate before you cast that vote in November.

This is also a great time to ask people who have been to ALS Advocacy Day to share their experiences with individual legislators who might be running for reelection. That could be an important eye-opener.

Friday, October 8, 2010

How Many People Die From A Mysterious Disease

...never knowing that it was really ALS?


How many thousands of people die before a correct diagnosis? It's outrageous. Perhaps a perception of a disease being "rare" is one of those things that propagates itself.

Wednesday, October 6, 2010

ALS - A Fringe Benefit of U.S. Military Service or A Fringe Benefit of Any Military Service

... or of something in between?

The Canadian Prime Minister is on the case for his veterans with ALS http://www.globalnews.ca/money/Harper+vows+action+vets+with/3542115/story.html

The big question that is just begging for an answer -- Have there been any studies looking at the incidence of ALS in military veterans other than U.S. military?

Is the increased incidence an American phenomenon? It would seem that the answer to that question would yield huge clues as to possible causes of ALS.

Does anybody know? Anyone?