ALS Has A Way Of Defining The Meaning of Christmas

It's the best of times and the worst of times.

William Wan hits a home run in his feature in the Christmas Eve Washington Post --
http://www.washingtonpost.com/wp-dyn/content/article/2010/12/23/AR2010122305469.html

This is an important story that hundreds of thousands of people have experienced first-hand as the Hermans experience every day. Thanks, Mr. Wan, for telling it so beautifully.

This Is Totally Cool For ALS Awareness

Thank you, Toyota Racing.

http://www.toyotaracing.com/motorsports/video.html#dec-20-2010

Please Take 15 Minutes And Chime In

One of the comments on the posting regarding the ALSA Advocacy Listening Tour for 2011 hit the nail on the head -- "If they do ask for your input- what IS YOUR input? What do you think is of utmost importance?"

Here's your chance to speak up and share your ideas. It will take around 15 minutes to complete the survey. We'll summarize the results and will share them with the advocacy departments at ALSA, ALS TDI, and the MDA... and with all of you here. Please click the link below, chime in, and make a difference!

ALS Advocacy Survey

Urgent Action Item

From ALS TDI http://www.als.net/forum/Default.aspx?g=posts&m=328809#328809

Please! Call your legislators immediately to urge them to support the Omnibus spending bill! The bill contains millions of dollars for ALS, that could evaporate if this bill is not passed. The bill must be voted by Saturday, so this is an immediate need. Please contact me with any questions.Thank you,
Carol HamiltonDirector of Government Affairs and Foundations
ALS TDI
chamilton@als.net

https://writerep.house.gov/writerep/welcome.shtml

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Has your opinion been solicited yet for ALSA's Advocacy Listening Tour that is currently gathering feedback for advocacy priorities for 2011?

We started a poll earlier and had some viewing problems on some machines, so please just chime in with your Yes or No response in the comments area below. Thanks.

As of 8:30 am EST when this posting was started we had
1 Yes vote
3 No votes

Thanks for chiming in below.

Something Really Nice Is Happening Today

While the ALS / MND organizations and scientists meet in Orlando this week, ALS TDI has been kind enough to be the ears and eyes and messengers into those meetings for the thousands of interested people who can't be there.

So follow @ALSTDI on twitter (hashtag #ALSSYMP) or like ALS TDI on Facebook or simply check out the forum at http://www.als.net/ .

This is why iPhones and Android phones and Blackberries were invented. This kind of live interaction is perhaps the highest use of twitter and Facebook.

Thanks for making us all a part of those meetings, ALS TDI. It's pretty exciting when those with ALS and those who care about it know the pulse and information as things unfold... and it's a blessing to be able to be a part of those meetings remotely.

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.

Stem Cells for $1000, Please, Alex

On Thursday afternoon, there will be a special opportunity to ask the experts at the big ALS organizations' meetings in Orlando. People with ALS and their families are welcome to attend. No reservation is required.

Click here for details.

As you can see on the agenda, there are short discussion periods after each presentation for people to "Ask The Experts."

If you are attending and would like to submit your question in advance, or if you are unable to attend, you may submit questions to the moderator, Sharon Matland, Vice President, Patient Services, ALS Association smatland@alsa-national.org .

We hope that many are able to take advantage of this opportunity to access these prominent scientists with their questions.

Let's Hope That Some Good News Is Coming From Orlando In The Next Few Days

This week there are large, annual, international meetings of motor neuron disease (ALS) organizations in Orlando.

http://www.alsmndalliance.org/meetings.html

This is the first in ALSadvocacy's memory that the meetings have been held in the U.S.

On Tuesday and Wednesday the organization of organizations will hold internal meetings. Let's hope that the topic of sending out some global shock waves via a unified global ALS MND awareness day might cross their minds. Let's hope that those who venture over to the Disney complex will pay attention to the creativity and energy that can make an organization stand above the others. Let's hope that they're ready to try some radically new and different approaches to creating awareness of ALS. Let's hope because the status quo hasn't worked.

On Thursday, a special "Ask The Experts" forum will be held. Let's hope that some insightful questions will spur some new thinking into some new answers. Let's hope.

On Friday, a special forum for health professionals dealing with ALS will be held. Let's hope that some innovative approaches to delivering healthcare for those with ALS will be discussed. Let's hope that the American healthcare delivery system for those with ALS might learn some new concepts. Let's hope.

The culmination of the meetings will be on Saturday the 11th through Monday the 13th when the international innovators in ALS research and in dealing with ALS will give their presentations. Let's hope that something new and newsworthy is going to be revealed as a part of these presentations. Let's hope that some new clinical trial success or drug development investment will be revealed. Let's hope because we have decades of promise without deliverables.

That's a very long set of meetings and we have some hopes. Talk's cheap. Show us what you can do differently, motor neuron disease organizations, to beat this beast of a disease.

The Wall Street Journal Reports On A Man Who Did Something Jawdropping

http://online.wsj.com/article/SB10001424052748704638304575637332280726598.html?KEYWORDS=als

From the Wall Street Journal, November 27, 2010, by Shelly Banjo

"A Long Ride To Aid ALS Sufferers"

Chris Pendergast is a man with ALS who is a hero to the cause with his annual Ride for Life, and now he is the star of an article in the Wall Street Journal.

"I saw the pathetic amount of research and support for patients and immediately became an advocate," Mr. Pendergast says, speaking through a ventilator. "I needed to do something jaw-dropping to capture the attention and imagination of the public because no one was paying attention to this disease that was lingering in the background and painfully killing people."

Let's Really Redefine Christmas This Year

Please take a look at http://www.redefinechristmas.org/ . There are some wonderful messages there along with the tools to make Christmas count this year.

As you evaluate U.S. charities, please consider making donations (plural) to several ALS 501c3s.

Following are some for your consideration:

www.alsa.org and its independently funded local chapters such as www.alsafl.org and www.alsaindiana.org and...

www.als.net

www.als-mda.org and www.augiesquest.org and www.bettysbattle.org and

www.wingsoverwallstreet.org

www.projectals.org

www.alsguardianangels.com

www.prize4life.org

www.pva.org

www.alscenter.org

www.lesturnerals.org

We who are able to donate need to make this more than an either-or choice. It's time that we raise the resource tides for multiple organizations involved in ALS research and patient services.

There would be no finer Christmas gift than to give a hand to several organizations searching for the cure and to several helping families deal with a disease that nobody should have to face at Christmas.

Let's redefine Christmas and let's redefine the way we are fighting ALS -- together!

Is It Not Time To "Go" To Washington In New Ways?

May will be here before we know it. Anyone who has participated in ALS Advocacy Day will tell you that those face-to-face encounters with legislative staff members make an impression. Anyone with ALS who has participated has gone through incredible hoops to get there, to navigate through the city, to use the rest rooms, to search for accessible entrances, and to make it through an exhausting day. Caregivers run themselves ragged. All spend a small fortune on transportation and hotels. Sometimes that investment of precious energy and money culminates in a five-minute meeting in a hallway with a staff member.

Envision this in 2011. One patient and one legislator in every state are selected to pilot something efficient and economical (two magic adjectives in the new Congress). A webcam is set up in the patient's home. The patient is ready to use whatever communication means works best for his or her situation. The patient has the talking points for the 2011 ALSA advocacy requests. The legislator has a staffer set up a webcam in the Senator or Congressperson's office. At the appointment time, the patient and caregiver can communicate with the legislator in an extremely efficient and cost-effective manner. The talking points are made. The approach is novel and will be remembered by the legislator and staff. The concept might even be nationally newsworthy!

This could complement the in-person participants beautifully. This could get the messages into offices that might otherwise have been hard to reach. This is not rocket science, but it sure would look that way in the halls of Congress.

It's time for some people to go to Washington in new and different ways. The first organization to pull this off will make the splash. Anybody ready for a big splash?

If She Can Work The Miracle Of A Successful Write-in Campaign...

...then perhaps she'll help us work the miracle of finding a cure for ALS.

http://blogs.wsj.com/washwire/2010/11/16/murkowski-i-dont-think-palin-enjoyed-governing/#

I love it when there is a picture of a United States Senator wearing a red Strike Out ALS wristband in the Wall Street Journal!

We hope to see the best friend the cause has on Capitol Hill in May for Advocacy Day.

Ut-Oh!

http://www.telegram.com/article/20101110/NEWS/11100338/1237

NIH Fears Cuts In Research Funds
by Alex Wayne, Bloomberg News
WASHINGTON — Spending cuts proposed by the incoming House majority leader would reduce scientists’ chances of winning U.S. grants by almost half, demoralizing researchers and slowing drug development, the National Institutes of Health’s director said. Republicans taking control of the House next year would roll back funding to agencies including NIH to fiscal 2008 levels, according to a proposal by Rep. Eric Cantor, R-Va., who is likely to become the chamber’s majority leader. That would equate to a 4.3 percent, or $1.3 billion, cut to the agency’s $30.8 billion annual budget.

Here Is A Stunning Ad

From the Alzheimer's Association in this morning's Wall Street Journal, page D2 --

"We'd show an Alzheimer's survivor here, if there were one."

0% survival.

6% the funding of cancer.

100% insane.

It's a stunning ad with a stunning message.

Where are the stunning messages regarding the other "A" disease -- ALS?

It's time to stun some people into stopping another insanity.

What If They Held A Census And Nobody Came?

Statisticians can do amazing things. We saw that last week when elections were called fairly accurately within minutes of polls closing. For some things though, no amount of statistical magic can substitute for an old-fashioned count of noses. This is the case with ALS.

ALS advocates finally obtained the permission of the United States along with the funding to make such a census happen. This census has been named the U.S. ALS National Registry. It started counting noses a few weeks ago.

If you have ALS, please go to the CDC (an agency of the United States Government) website and have your nose counted by "joining the ALS registry." https://wwwn.cdc.gov/als/Default.aspx

Until all people with ALS join the registry, you will be cursed with both low estimates of how many people have ALS and a lack of data to prove what environmental factors might play a part in ALS.

If you have ALS, please enroll. If you know anyone with ALS, please urge him or her to enroll.

I buried a loved one to ALS and the clues that her medical and life history contained were buried with her. That need not happen ever again.

This Should Shock And Awe Us All To Action!

When The ALS Clock Is Ticking, Five Months Can Be The Better Part Of A Lifetime

The following was posted on an ALS patient message board a few days ago:

I've been spearheading a push to see if we can get the 5 months waiting period change when you apply for social security disability. The law reads you must wait 5 full calendar months before you receive your first disability check. I've been working hard with Senator Cathy Young and US Senator Charles Schumer. This has been 6 months worth of meetings, phone calls, etc. Please help all PALS by writing a letter to help support this change. ANYONE, can write a letter. We are asking all letters be done by November 12th.

I'm sure I'm not the only one who has been financially ruined because of this wait time experience? Any others with the same issues? Because we are a working middle class family, we are not eligible for any other type of support or asistance with anything. My husband has a job, I was the bigger paycheck, but his paycheck doesn't make up for the loss of my income, not even close. One place we went to for help told us to have my husband quit his job, then they could help us!!! How insane is that?
Here is the e-mail address to support this change:
Laura_Monte@Schumer.Senate.gov or mail to Laura Monte, 130 South Elmwood Ave. Buffalo, NY 14202. Please put in the subject line of the e-mail: Wait time for SSD.

A sample letter is on my facebook page, Deb McQueen Quinn, just print it out and sign it and drop it in the mail or copy and paste and send by e-mail. Letters, the more the better, must go to the healthcare advisor and they will do the research on SSD and then make a determination if they find just cause to move ahead to introduce a new law. If not, we will get a letter back explaining why not. I did the sample letter, provided my issues over the last 6 months during the wait time and also included my Familial ALS history. If you don't feel you want to send it to Senator Schumer, please send it to your local Senator, but, the power is in numbers and he is on our side and all ready understands where I'm coming from on this issue. IF we make it far enough, Schumer will ask for some of us to come to DC for congressional hearings on this matter. Hope.....mine is still with me!

Letter Campaign - Take III

ALSA is again promoting a letter-to-the-editor campaign for Veterans' Day.

Here are two old postings from ALSadvocacy with some thoughts for your consideration in hopes of making your letters more likely to be published.

http://als-advocacy.blogspot.com/2009/11/gonna-sit-right-down-and-write-myself.html

http://als-advocacy.blogspot.com/2008/10/alsa-letter-campaign-for-veterans-day.html

Before you take the plunge and use the tools at http://alsa.capwiz.com/alsa/home/, I urge to to consider the thoughts at those links above and to google "guidelines letter to editor" and look at the guidelines at major publications.

The Best Predictor Of Future Behavior Is Past Behavior

That's one of those wise parenting expressions that may also be helpful as you consider who will earn your vote on Tuesday.

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.
http://capwiz.com/alsa/issues/bills/?bill=9776086&cs_party=all&cs_status=C&cs_state=ALL

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.

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.

Watch The Video - This Is ALS

It races on and you can't stop it!

http://www.wthr.com/story/13373864/racing-team-member-fights-als-battle

Listen to the message carefully. He was fine in December. Fine. On top of the world and healthy.

This is ALS.

That Was The Week That Was

http://alsspreadtheword.blogspot.com/2010/10/this-should-have-been-huge-news-week.html

That's One Small Step For Man, A Giant Leap For Mankind

The U.S. National ALS Registry is open for business.

All people in the U.S. with ALS are encouraged to register themselves at https://wwwn.cdc.gov/als/AboutRegistry.aspx

It has been a long time coming. Perhaps some smart person will now be able to connect the dots. At least we are collecting them now!

Thanks to all who worked so hard to make this happen. It has been disrespectful of those who have died from ALS that we did not retain their clues. That changes today.

This Is Big News From the NFL and the NFLPA Regarding Players With ALS

From the Washington Post this afternoon --

http://views.washingtonpost.com/theleague/nflnewsfeed/2010/10/nfl-union-to-provide-coverage-to-retired-players-with-als.html

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.

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg
Kevin Turner