Saturday, October 30, 2010
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.
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
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.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.
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:
Saturday, October 23, 2010
Friday, October 22, 2010
Wednesday, October 20, 2010
Monday, October 18, 2010
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.
Tony Proudfoot (CFL)
Saturday, October 16, 2010
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.
Friday, October 15, 2010
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...
Thursday, October 14, 2010
Monday, October 11, 2010
- 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?
Friday, October 8, 2010
Wednesday, October 6, 2010
Tuesday, October 5, 2010