The Governor And The General Are Now Aware

...and helping to pass the word forward...




Thank you, Governor Daniels and General Umbarger.

This Is Closer To The President Than We've Ever Been On ALS Advocacy Day

Here's an opportunity to speak up... ALS research needs, ALS in military, FDA reforms, ALS stealing our best and brightest but not (yet) perceived as a cash cow for pharma investment, dysfunctional healthcare delivery, lack of national (including governmental) urgency as people continue to die, using the wrong metrics to measure the impact of a disease,... Please pass along to anyone who might be willing to give the President and others in the Executive Branch an enlightening, compelling earful. regarding any ALS issues. Thanks!

Your State of the Union Interview With President Obama

http://www.whitehouse.gov/blog/2012/01/23/your-state-union-interview-president-obama?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

KING 5 Rules!

Thanks to KING 5 and to all who raised Cain and finally got through to the bureaucrats! This is good for veterans with ALS and good for taxpayers.

http://www.king5.com/news/investigators/Help-coming-for-veterans-with-Lou-Gehrigs-disease--137264418.html

Every American Needs To Hear This Today

Here is a 30-second message that is direct, clear, and important. Please listen, then pass it along.

This Is Outrageous

Shame on us.

http://www.king5.com/news/investigators/Veteran-dies-waiting-for-benefits----133338928.html

Perhaps this Veterans' Day we need to stop patting ourselves on the back for the past work done for veterans with ALS and start fixing a few things!

Wish We Could Go Back To GI-Bill Education And A Great Home Loan

... rather than having our vets get the awful fringe benefit known as ALS.

Veterans - Time To Be Seen And Heard!

Here is a nice website from the ALS Association...

http://www.alsa.org/advocacy/veterans/

If you are a veteran who has ALS or you have lost a loved one to ALS who served in the military, please add a picture. This will give the mysterious connection between military service and ALS some much-needed visibility!

Please pass this word along. Thank you.

They Had No Idea That This Was Service-Related

And there is no excuse for our legislators to have no idea. This is an unacceptable "fringe benefit" of serving our nation in our military.

Mike keeps fighting for our country in ways that he never expected.

This Was A Powerful Message In Our Nation's Capital

Urgent Action Is Requested Regarding DOD ALS Research Program

Following is from an email from the ALS Association:

Congress is proposing to eliminate the ALS Research Program (ALSRP) at the Department of Defense. They are proposing to take millions in funding away from a program that was specifically created to find a treatment for ALS, a program that has invested nearly $18 million for ALS research in just the past three years. We need your help today to save the ALSRP! Please contact your Senators and Representative and urge them to continue funding for this vital program. Tell Congress that they need to stop ALS, not the funding that is so urgently needed to find a treatment. A sample letter, which you can personalize and send directly to your elected officials in Washington, can be found in the Advocacy Action Center of our website, http://capwiz.com/alsa/home.

Please send the letter today! And tell your friends and everyone in your address book to do the same. Congress needs to understand how critically important the ALSRP is to the search for a treatment. They need to know how important this program is to their constituents, the people with ALS they were elected to represent. Contact Congress TODAY!

If you have any questions, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-444-ALSA. Thank you!!

There Are Many Ways To Find One's Voice...

...even when ALS has stolen the ability to speak.

http://armylive.dodlive.mil/index.php/2011/02/facebook-allows-soldiers-to-tell-their-story/

It's well worth a click and a read for many reasons.

ALS Advocacy Conference Information Is Posted

From an email from the ALS Association advocacy department --

The ALS Association is pleased to announce that online registration for the 2011 National ALS Advocacy Day and Public Policy Conference will open at 11:00am (EST) on Monday February 7, and will be available on The Association's website at www.alsa.org/policy/alsday.cfm.

An electronic copy of the 2011 conference registration brochure also will be available on the site and can be found here. The brochure includes a detailed schedule of events for this year's conference, which takes place in Washington, DC May 8-10. Hotel information and details on registration fees, including Sunday only fees, early bird registration deadlines and how to reserve an ADA accessible hotel room, also can be found in the brochure.

Please note that in order to request an ADA accessible hotel room, attendees must contact Mary Wisniewski, event planner for the conference, at adaroom@alsa-national.org or by phone at 202-746-0043 (please note this new email address). ADA room reservations open at 11am EST on Monday, February 7. As always, The ALS Association waives conference registration fees for all people with ALS and a caregiver traveling with them to Washington, DC.

The Advocacy Conference has played a major role in advancing the fight for a treatment and cure, inlcuding helping to secure $580 million in government funding for ALS research and vital Medicare benefits and benefits for military veterans and their survivors. Equally important, the conference empowers people with ALS and their families with the ability to fight back in the war against ALS. Click here to learn more about this year’s exciting conference. We hope you will join us this May as we continue to create the roadmap that will lead to a treatment and cure for ALS.

If you have any questions about the 2011 conference, please contact us at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.

Here's A Question For The Global ALS MND Organizations

As you get your heads together in Orlando this week, please consider this.

We know that there is an increased incidence in ALS in those who have served in the U.S. military.

Have any other countries studied to see if that is the case in their military veterans?

If there have been no such studies, would some not seem like an urgent need? If there have been such studies, the world is all ears to hear about them.

Is it a military phenomenon or an American military phenomenon? It would seem that the answer to that question might yield some important clues.

This Should Shock And Awe Us All To Action!

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.

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...

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?

ALS Communicators, Carpe Diem! Carpe Microphone!

http://alsspreadtheword.blogspot.com/2010/08/now-were-talking.html

BU and VA Work Together - It's About More Than Football

http://www.eurekalert.org/pub_releases/2010-08/bumc-buv081710.php

(BOSTON) – The Center for the Study of Traumatic Encephalopathy (CSTE) at Boston University School of Medicine (BUSM) and Department of Veterans Affairs (VA) announced today that they have provided the first pathological evidence that repetitive head trauma experienced in collision sports is associated with motor neuron disease, a neurological condition that affects voluntary muscle movements. The most common form of motor neuron disease is amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. The findings will be published in the September issue of the Journal of Neuropathology and Experimental Neurology (http://journals.lww.com/jneuropath).
...
"When we read reports about cases of the disease being linked to specific activities or experiences, such as the increased risk associated with military service, or this one regarding professional athletes, we are reminded of just how complex of a disorder ALS is. We're hopeful that this new work may shed light on potentially exciting new possibilities for biomarker and therapy development," said Steve Perrin, PhD, CEO and Chief Scientific Officer of the ALS Therapy Development Institute.
...

Lou Gehrig's Disease Made The Times-Cast

and the story is moving up the most-emailed list.

This is an excellent opportunity to raise the noise level on the need for more ALS research and retention of patient data!