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.

Friday, October 31, 2008

Iplex - Demonstration on November 11 in Washington

Details are at

ALSA Letter Campaign for Veterans' Day

The ALS Association is promoting a letters-to-the-editors campaign for November 11, Veterans' Day.

Personal notes from --
The capwiz tools are great for locating the media; however, I encourage you to...

> Make your letters unique. Once a newspaper catches on that a letter to the editor is a form letter, it will not be likely to publish and it can permanently hurt the writer's chances for future consideration.

> Make some reference to the publication in your letter. Letters to the editor are normally distinguished from op-eds by making a specific reference to something that has been published in the paper. Even making reference to how supportive the paper or station has been of veterans in the past is better than nothing.

> Write something about half the length of the form letter. Many publications have word count restrictions of 150-200 words or less for letters to the editor. The boilerplate letter in capwiz is 328 words.

> Provide your phone number. The submission form in capwiz does not require a phone number. Major publications require phone numbers and they will call a writer before publication to verify the identity of the writer.

Here are the New York Times guidelines for letters, and they are not unusual. I encourage you to read them before submitting your letters in hopes that you may be successful in being published --

Following is the announcement from the ALS Association:

As Veterans Day approaches on November 11, The ALS Association’s Advocacy Department is launching a letter-to-the-editor campaign to raise awareness of the connection between ALS and military service, build support for our cause on Capitol Hill and continue funding for the ALS Research Program at the Department of Defense. Therefore, we have prepared a sample letter that you can easily send to local media outlets leading up to Veterans Day and continuing throughout the month.To view and send the letter, simply go the Advocacy Action Center of our website,, select Take Action and follow the onscreen instructions. The tool will identify all media outlets serving your area and you can select the local publications (up to five at a time) to which you would like to send the letter. Please customize the letter to include your personal story or that of a local veteran living with ALS in your area. Such personal accounts demonstrate how important this issue is to the local community and increase the likelihood that your letter will be published.In addition to raising awareness of ALS and the connection to the military, the letter-to-the-editor is another way to recruit and mobilize advocates and to engage Members of Congress on these critical issues. It also builds support for our cause and encourages people to take action. We strongly encourage you to take advantage of this important tool leading up to Veterans Day on November 11. Veterans WebsiteThe ALS Association has created a special Veterans section of our website,, that includes important resources for veterans with ALS, their families and survivors. The site has answers to frequently asked questions about the new VA regulations for ALS and a link to our Roll Call of Veterans. Indeed, please encourage all veterans you know to join the Roll Call of Veterans. Non-veterans also can become ALS Advocates via the site and receive the tools and information they need to help us fight for veterans and all people with ALS. If you have any questions or would like additional information, please contact the Advocacy Department at or toll free at 1-877-444-ALSA.

60 Minutes

From ... 60 Minutes Sunday evening November 2, featuring assistive technology used in ALS. It's awesome to be on 60 Minutes!

Thursday, October 30, 2008

Does ALS Impair the Memory?


So to people with ALS, caregivers, widows, widowers, orphans, and friends, the following might be of help as you peruse the candidates and the issues before November 4.

Remember when the ALS Registry Act passed the House last year with an overwhelming majority?

"Overwhelming" is certainly not equivalent to "unanimous."

Following link shows the House vote. Please note the three who underwhelmed by voting Nay. Please note the 17 who didn't show up for work that day.

Social Security Cutting the Red Tape

From AP, October 27 --

Social Security speeds disability claims review

People with cancers and other severe medical conditions will get quicker action on disability claims under a new Social Security program.

The time needed to decide claims could trim from 100 days or more to as few as two, said Michael J. Astrue, who heads the Social Security Administration. The Compassionate Allowances initiative will apply to 25 rare diseases and 25 cancers, and may be expanded later, the agency said Monday.

"This is something that I've believed in for a long, long time," Astrue said in an interview before the announcement. His father received disability benefits because of a rare form of brain cancer.

The program focuses on diseases where the conditions are so severe or the treatment so difficult that that the person making the claim obviously cannot continue working. Astrue said the agency can approve many claims solely on confirmation of the diagnosis. Those include acute leukemia, amyotrophic lateral sclerosis (ALS) and pancreatic cancer. Among others on the list are inoperable forms of breast, bladder, kidney and bone cancer; Creutzfeldt-Jakob disease; Gaucher disease; and Rett Syndrome.
At a public hearing on the program last spring, Dr. Edward Benz, president of the Dana-Farber Cancer Institute, said 1.4 million cases of cancer are expected to be diagnosed this year and a significant number of cancer patients are uninsured or underinsured.

"Coupled with an inability to perform work given the disabling impact of their diseases, the financial impacts to these patients and their families are enormous," he said.

Depending on the nature of the claim, a decision from the agency can take months. Getting a hearing for an appeal may take longer, more than a year at times.

This year the agency began a rapid action process whereby computers scan for key terms that make it 95 percent certain a claim will be accepted.

Together with the new program based on specific diseases, the agency estimates the two-track system will result in a decision for 6 percent to 9 percent of disability cases, for as many as 250,000 people, in a matter of days.

Even with the speedier processing, there will be no change in the law under which claimants must wait five months before getting benefits. Those receiving approval may have shorter periods to wait because the five-month period begins from the onset of the disability.

The Social Security Disability Insurance program for the past half-century has paid monthly benefits to disabled workers and certain family members who have worked long enough and paid Social Security taxes.
The Social Security Administration this year will receive about 2.6 million disability claims.

On the Net:
Social Security program:

Thursday, October 9, 2008

How About Daughters Against ALS?

Advice columnist Carolyn Hax in the Washington Post

Advice columnist Carolyn Hax tells what made her mom special
12:00 AM CDT on Thursday, October 9, 2008
Carolyn Hax
Adapted from a recent online discussion.

Dear Readers: As many of you know, I lost my mom, Liz Hax, to ALS (also known as Lou Gehrig's Disease) in 2002. Every fall, I participate in the Walk to Defeat ALS to raise money and awareness to fight this horrific illness.

Dear Carolyn: What, in your opinion, made your mom so special? Many of us reading your column have unhealthy relationships with our parents but want to rise to the occasion for our own children. How did your mom do it? I have a little girl, and I want to do my best by her.

Dear Pittsburgh: That you care so much will go a long way toward making you an excellent parent, but you ask a great question.

Things I really liked about my mom:

She was there.

She listened to us, knew our friends and came to our games.

She hated self-important people, chitchat and phonies.

She was engaged with the world around her and didn't seem out of place in a library, at a concert or at a sporting event. She encouraged varied interests and enjoyed them with us.

She granted us freedom and only helped when asked (though holding back strained her very being).

She didn't withhold her flaws. She held grudges, she got crabby, she burned dinner, she said the wrong things.

She had four babies in five years and wrangled them into adulthood.

She taught the values of hard work and delayed gratification but also allowed moments of indulgence.

I miss her every day.

Write to The Washington Post, Style Plus, 1150 15th St. NW, Washington, DC 20071, or e-mail.

Finding Compelling Visual Images

The Indianapolis Star has an article about a group fighting domestic violence and bringing their cause to life by placing empty pairs of shoes representing victims at a courthouse.

It gives one chills to look at each pair of shoes and to think about a vibrant woman who was killed.

We need to find some ways to send some chills with some images of the thousands and thousands who have been killed by ALS.

Giving Thanks

It's not Thanksgiving yet, but many of us who drove our Senators' staffs nuts trying to get the ALS Registry Act passed should remember to send them some emails of appreciation.

Tools to make it easy are available at

It only takes a few seconds and we really should be grateful. As we look at world events since that day when they passed the ALS Registry Act, I doubt that we would have seen another window of opportunity for a loooong time. Our legislators and their staffs did deliver for us.

Thursday, October 2, 2008

Information from ALS Association Regarding DOD Research Funding

Following is a communication from the ALS Association:

We are excited to let you know that The ALS Association achieved another victory in Washington this week when the President signed into law the FY 2009 Department of Defense Appropriations bill. For the first time, Congress included $5 million in the bill to fund the ALS Research Program (ALSRP) at DOD! We now have a congressionally established program at the DOD that is dedicated solely to ALS research. It is the only ALS specific program at the DOD and is the only program focused on translational research with the goal of finding new treatments for ALS. This is an especially significant victory not only because very few funding bills even passed Congress this year, but also because we overcame a significant amount of competition for scarce federal dollars. The $5 million we secured will be available to ALS researchers across the country. Moreover, the collaboration facilitated by the ALSRP and the additional dollars will provide the ALS community with greater opportunities to develop meaningful treatments. Funding Continues Critical Partnership with DODWhile this is the first time Congress has ever provided funding for the ALSRP, the program was initially developed last year when The Association partnered with DOD to bring new focus to their ALS research portfolio, which we originally helped to start more than five years ago. Dr. Lucie Bruijn, The Association's Sr. Vice President of Research and Development, and Ellyn Phillips, President of the Greater Philadelphia Chapter and Chair of the Association's Board of Trustees Advocacy Committee, served on the ALSRP peer review committee and the program itself was modeled after our TREAT ALS program. Additionally, we successfully worked with the DOD earlier this year to nominate ALS Association Trustee Diane Winokur as a patient/family representative advising the ALSRP on the impact research proposals may have on patients and families.We look forward to continuing our strong partnership with DOD in 2009 to advance ALS research and find a treatment. Thank You!This achievement is the result of the efforts of ALS Association Chapters, PALS, families and military veterans to reach out to Congress and tell the ALS story. It also demonstrates the effectiveness of our strategic outreach, which began when the President released his budget last February and continued through Advocacy Day and the rest of the year.

For the third time in the past two weeks, we have succeeded in accomplishing one of our top priorities. Passage of the ALS Registry Act, implementation of historic new regulations for veterans with ALS, and now funding for ALS research could not have been accomplished without the active involvement of the entire ALS community. THANK YOU!!

Join the Roll Call of Veterans!Veterans with ALS have continued to play an important role in our advocacy efforts. If you are a veteran or know a veteran with ALS, please join the Roll Call of Veterans on our website, here: Learn how you can help us to continue to advance critical issues that will benefit veterans and the entire ALS community.

If you have any questions, please contact us at or 1-877-444-ALSA. Thank You!