I am new here, and this is wonderful news! My husband is a veteran, he is a Desert Storm Vet, and has ALS. We have been back logged in the paperwork trying to get asistance from the VA, and now currently have PVA of Michigan working with us. Hopefully now we will be able to get the assistance that we need. I forwarded that link to all my contacts that have been diligently working with us.
Thanks to the efforts of ALS Association Chapters and advocates across the country, we are thrilled to announce some exciting developments on two of our top priorities this year: the ALS Registry Act and expanding benefits to military veterans with ALS.
We recently have shared this news with ALS Association Chapter leaders, but please note that some of the following information is preliminary. We want to share it with you now to ensure you receive accurate information and to let you know that we will need your help in the coming days as these issues move forward in Washington.
Senate to Vote on the ALS Registry Act
The Senate is expected to vote on the ALS Registry Act (S. 1382) within the next few weeks, before Congress adjourns for the August recess! This is a significant development and comes after The Association worked closely with Senators Harry Reid and John Warner to navigate the obstacles that have delayed consideration of the bill.
The bill is expected to be included as part of a larger package of other unrelated legislation that has broad bipartisan support, but has been blocked from moving forward. We anticipate that there may be a series of votes in the Senate as the package advances so you may be asked to reach out to your Senators several different times over the next few weeks. We will share additional information and action items with you as events unfold, but please be prepared to reach out to your Senators, particularly Republicans. Their support will be critical to our success.
Our strategic outreach over the past few years in support of the ALS Registry Act has enabled us to get to this point. As you know, the House passed the bill by an overwhelming 411-3 vote last year and the Senate HELP Committee followed by approving it by unanimous voice vote. Thanks to your efforts, we also have generated 77 cosponsors for the bill in the Senate this year - more than three-fourths of the Senate! With your continued help, we can build on this progress, pass the bill in the Senate, and enact the ALS Registry Act!
So please keep an eye out for our Action Alerts letting you know when your outreach can make the most difference.
The Secretary of Veterans Affairs is expected to officially announce that as of August 1, 2008 veterans with ALS will automatically be considered service connected and eligible for VA health and disability benefits!
This move by the VA would be a huge victory for veterans with ALS and would help ensure they have access to the care and benefits they need when they need them. It also comes just one month after The Association testified before the House Veterans Affairs Committee in support of HR 5454, legislation we championed at Advocacy Day that would establish ALS as a service connected disease. It appears that this legislation no longer may be necessary!
However, this news is still preliminary and details have not been released, so newspaper accounts you may have read may not provide complete information. In fact, the Department of Veterans Affairs currently is considering regulations to implement this policy. We will share additional information, including answers to frequently asked questions, as we continue to work with the VA and our supporters in Congress over the coming weeks.
In the meantime, we already have requested that ALS Association Chapters begin to make plans to notify the veteran communities in their states about this critical development once it becomes official. Our goal is to ensure that every veteran with ALS obtain service connected benefits as soon as possible.
We also encourage individuals to help us identify veterans with ALS who may benefit from this change. Therefore, please continue to reach out and encourage all veterans with ALS to join our Roll Call of Veterans. Your outreach can help us deliver the latest news to our veterans so that they can access much needed benefits.
The ALS Association's VA Issue Team, Chaired by Pat Wildman and which also includes both veterans with ALS and Chapter staff, identified this issue as a top priority shortly after we formed the VA Issue Team in 2006. Since that time, we have conducted significant outreach to educate Congress and the VA about this issue and to identify and activate veterans to participate in our advocacy efforts.
In addition to The Association's efforts, several veterans with ALS have played particularly important roles in advancing this issue, including:
Jeff Faull from the Greater Philadelphia Chapter. Jeff is co-chair of the VA Issue Team and last month testified on behalf of The Association before the House Veterans Affairs Committee in support of HR 5454. The bill, and Jeff's testimony, has helped to increase the pressure on the VA to act. Jeff also has done a tremendous job recruiting more veterans to play a role in our advocacy efforts and has been instrumental in developing materials that ultimately will serve as a Guide to help Chapters and veterans navigate the VA system.
Brigadier General Tom Mikolajcik, USAF (Ret.) from the South Carolina Chapter. General Mikolajcik helped to found the Chapter in South Carolina and has been helping to lead outreach on this issue. He testified in support of the issue before the House Veterans Affairs Committee last year and also has led outreach to Secretary Peake as well as to Members of Congress, including Rep. Henry Brown and Senator Lindsey Graham who have championed the issue in Congress.
Jim Thew from the Greater Chicago Chapter. Many in the ALS community already may be familiar with Jim him as he has been the face of The Association's nationwide campaign to advance veterans issues for more than two years. A Navy veteran, Jim has helped to lead our VA Issue Team as co-chair and also raised these issues when he testified before a House Committee in 2007 as well as before the Congressionally established Research Advisory Committee on Gulf War Veterans Illnesses.
We would like to thank everyone for their efforts which have helped to make all of this progress possible. BUT, we still have more work to do. So please help us identify veterans in your area and keep an eye out for our Action Alerts over the coming days and weeks.
And if you have not already responded to Monday's Action Alert about the ALS Research Program at the Department of Defense, please visit the Advocacy Action Center today and contact your Senators in support of this vital program.
With your continued participation, we can make a difference in the lives of everyone who has been touched by this disease!
If you have any questions or would like additional information, please contact the Advocacy Department at [email protected] or 1-877-444-ALSA.
If you have not done so already please sign up at the Roll Call of Veterans link I posted above and make sure to check that you are a veteran. After doing so you will occasionally receive emails similar to the one I posted above either giving information or asking for advocacy action.
You truely are a great man and congrats on all your efforts. I am sorry I have not been here in a long time to help everyone out but I was taking a break. I hope all well with you and hope to keep in touch. Thank You for the effort you put infor all the Vets out there
I was just in the right place at the right time. The thanks should go to all those that took the time to talk, email and call their legislators and let them know their stories. Those are the people that got this done.
A single PALS will hardly get a second glance. 30,000 on the other demand notice. Add to that the CALS, family and friends and we are a force to be reckoned with as attested to by both the VA's actions and the push for the Registry.
These two things are huge for the ALS community. Not only does presumptive service connection come as a huge relief for veterans but it will ensure that the DoD and VA invest funds in research, testing and treatment development that will benefit all PALS. The ALS registry as we all know will conglomerate much needed etiological, demographic and population data into a single location to make the development of treatments and eventually a cure that much more likely.
Although there is never a good time to get the diagnosis I believe we are the ones that will see breakthroughs. In the past 138 years never has such focus and effort been placed on ALS and it is because we have decided we will no longer sit by and wait but instead push for advancements.
My hat goes of to all of you. Keep up the great work.
After all this exciting news for ALS, and Veterans with ALS, I would like to share some good news that my PALS received today. The VA called, and gave us the news that he had been approved for his disabilty and all the back pay! We haven't had a chance for it to sink in, but it is a relief, and now we can focus on getting the things we need to take care of him at home. All because of the small handful of people that gave a crap....thank you!:-D