ALS Association Helps to Fast Track Disability Claims

The ALS Association secured another victory in Washington, DC this week as the Social Security Administration (SSA) implemented a new initiative designed to speed disability applications for people with ALS and other serious conditions.

Under the new initiative, called Compassionate Allowances, SSA has included ALS on a list of conditions that automatically qualify for expedited reviews. When fully implemented, SSA estimates the initiative will shorten review times to an average of just six to eight days.

The ALS Association has strongly supported this initiative since it was first proposed in July 2007 and The Association testified in support of Compassionate Allowances during a hearing convened by SSA Commissioner Michael Astrue in December, 2007. (Our testimony is available on the Social Security website, here: http://www.socialsecurity.gov/compassionateallowances/TheALSAssociation(Steve%20Gibson)12-4-07.pdf.)

ALS Advocacy Improves Patient Services
The implementation of Compassionate Allowances is the latest example of how The ALS Association’s advocacy efforts have improved patient services, helping people with ALS access disability and Medicare benefits worth millions of dollars each year. Through our previous efforts, SSA established a presumptive disability ruling and included ALS on the Listing of Impairments, both of which have streamlined disability applications and enabled people with ALS to access disability benefits months or even years sooner than before. Our advocacy also led to the elimination of the 24-month Medicare waiting period for ALS, the only time this law has ever been amended.

Join our Fight
Successes like this new initiative, the enactment of the ALS Registry Act, new rules for veterans’ benefits and funding for ALS research could not have been achieved without the support of advocates across the country. So please encourage everyone you know to join our fight by becoming an ALS Advocate here: http://capwiz.com/alsa/mlm/verify/.

If you have any questions about this Update, please contact the Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.

New Website for ALS Awareness

Based on the post below, I started a new website focused on raising awareness of ALS. It is in the early stages and I'm sure things will change as we learn but the premise is to focus the ALS community on common awareness goals is a coordinated fashion.

There are currently 60 members and I would like to see at least 2000 before the end of the year. My intent is to utilize the ideas and creativity we have in the community in order to accomplish goals. Initially I see the goals as being small but growing as our membership and experience grow. Please stop by and give us a look and if you think you can help please register and contribute.

The name is currently Advocate4ALS although we are in the process of picking a new name centered around awareness. Check us out at http://www.advocate4als.org.

Well now what?!

We won't have to get our power chairs from the lowest bidder, the ALS Registry is passed, veterans with ALS are presumed service connected and the budget cycle is done. I guess there's nothing left to do. Wrong answer.

Its breast cancer awareness month. Guess how I know that. There are pink ribbons everywhere, its has been on TV twenty times a day, its in the news and its the same month every year. You know what?! We should have that for ALS! Oh, we do? That's right in May. How many people other than PALS and CALS do you think know that?

A week into the month and I've seen at least a half dozen survivors on TV. Don't get me wrong I respect the work they've done and what they've endured. If anything I think we should learn from them. I feel the ALS Association has done an excellent job advocating for ALS with the government and have made great strides in PALS rights and funding. However because of that focus which has been required getting the word out to the public has suffered. I believe they are lacking resources as in people to attack both fronts. I do however have what I believe could be a solution.

We as a community have proven again and again that we are a force to be reckoned with. We have individuals whose creativity in spreading knowledge of ALS rivals that of da Vinci. What we tend to lack is focus.

Let's take a look at a hypothetical example. Let's say someone posts and idea on the PatientsLikeMe forum about getting Oprah to do a show about ALS. That's a pretty good idea so lets say a few hundred people email the Oprah show, "Hey Oprah, love the show. Any chance you can do one on ALS?" From past experience that's a no-go.

Now let's assume we've gotten our ducks in a row and come up with a show idea and some substantial meat and potatoes to go along with it. This isn't rocket science and is something I am certain a few members of the community could put together in nothing flat in a chat room or forum. This would be written up so that all people would have to do is cut and paste. If we're organized getting a tenth of the ALS population shouldn't be to difficult which means 4,000 people. Now if we get 4,000 people and their friends and family to email the same letter with substantial ideas do you think we might get a shot?

That is just one example there are many other applications such as the CVS fundraisers or American Legion involvement. I see this taking shape in a community run web page which will house ideas, events and works in progress. It could give a central location for people to sell their ALS fund raising goods such as bracelets or calendars.

I see a core group of individuals to act as a steering committee. Their responsibility is to focus the community as a whole on a given task. This should be done in cooperation with ALSA but would mean that one person could act as liaison, pass that information to the steering committee which then acts on and shares with the community. The community as a whole decides the best way to proceed which the steering committee then finalizes and gives to the community.

I have a domain available and could have a web page together along with a forum in short order. My question is what do you think? Also are their more than one or two people who read this but mostly what do you think and would you support such an endeavor? Please comment and tell your friends.

ALS Registry Act on its way to President's Desk!

A few minutes ago, the United States House of Representatives passed the ALS Registry Act!! The legislation now heads to President Bush, who is expected to sign it into law.

Thank you to everyone for your tireless efforts to reach out to Congress. We are just one step away from realizing one of the most significant accomplishments for people with ALS and their families. A national ALS patient registry at the Centers for Disease Control and Prevention will collect information leading to the cause, treatment and cure of ALS. You should be proud of your efforts. We have made a difference!

The building blocks for a national registry are underway and the ALS Registry Act will enable us to take the next steps in building the registry and advancing the fight for a treatment and cure. Again, thank you!!

We will let you know once the President signs the bill into law. In the meantime, please make sure to thank your Senators and U.S. Representative for their support. Let them know that their efforts are appreciated and have not gone unnoticed. Sample letters you can send are available in the Advocacy Action Center of our website, here.

Thank you!

Victory

Victory!
Senate Passes the ALS Registry Act

A few minutes ago, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference!

The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law.

Congratulations to everyone!

ALS Registry through Senate

As I watched CSPAN2 this morning at 11:09 AM EST the ALS Registry passed the senate floor by unanimous consent. There has apparently been an amendment which I haven't yet been able to find. If that is the case it will have to be returned to the House for review. This is however a huge step in passing the registry considering it passed the house initially by a 411 - 3 vote.

VA to Grant Benefits to All Veterans with ALS

It's Official!!!
VA to Grant Benefits to All Veterans with ALS

We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military.

This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed!

ALL Veterans with ALS Eligible for Benefits

This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found here. The text of the regulation is available here.

Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.

The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.

Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at advocacy@alsa-national.org.

Although this is excellent news for right now we must focus on the ALS Registry. If all goes well we'll have two things to celebrate tomorrow so stay focused.