Mark Your Calendars -- Annual Worldwide Weekend of Prayer For Those Dealing With ALS

May 6-8, 2011

www.wehaveaprayer.org

Thanks for passing this information along to anyone who may be interested. This is a special kind of advocacy that has grown significantly every year.

And So We Wait

Questions submitted on CDC ALS Registry website:

Are you able to tell us how many patients have self-enrolled so far?

When is the earliest that we might know if the registry data challenge any of the prior assumptions about the incidence and prevalence of ALS in the U.S.?

Thank you very much.

Response:

Thank you for your interest in the National ALS Registry.

The Registry began allowing persons with ALS to self-register in October, 2010. Before any data can be released, ATSDR has to have at least 2 years of data in the Registry to be sure that the information is complete, accurate, and representative of all ALS cases in the U.S. Please check our website for updates on when data will become available.

If you need further assistance, please contact the Registry system administrator at ALSSystemAdmin@cdc.gov or call toll free at 1-877-442-9719 (9am-6pm ET).
Thank you,

The National ALS Registry Team

OK, ALS Organizations, It's Your Turn

Individuals have been adding the CDC's ALS Registry buttons to their blogs and websites. It's time for some of our major ALS organizations to get with it!

http://alsspreadtheword.blogspot.com/2011/01/curing-als-is-hard-adding-button-to.html

All together. Now. Please.

He Has A Dream... And A Plan... And Acts

This man with ALS is an ALS-advocacy hero --

http://www.abcactionnews.com/dpp/news/region_south_pinellas/pinellas_park/local-man-with-als-has-mlk-inspired-dream-

Nike Was Right - Sometimes You Need To Just Do It

The CDC's marketing of the national ALS registry has been less than impressive.

Sometimes you just need to take matters into your own hands. Let's do some simple things to remind people with ALS that they count and should enroll in the national registry so that they and their clues will be counted and used by researchers in the search for the cure.

Please, please, if you have a website or a blog or a Facebook wall, please post a link or a button to take people to the CDC's registry site.

Here's the link for the registry --

http://www.cdc.gov/als

Here's a link that will give you a snippet of html code that will let you display a nice registry button with Lou Gehrig's picture --

http://www.cdc.gov/SocialMedia/Tools/ButtonsGallery.html target=_blank

ALS organizations who lurk here, please just do it. Everyone will benefit if we have comprehensive data on how many patients there are in the U.S. (hard to believe, but we don't have those numbers yet). The clues that they harbor just may unravel this mystery of a disease.

Individuals reading this, ask your friends and relatives on Facebook or with blogs to add a link or a button.

Just do it. It's simple. It's free. I't's important. It will work.

Please.

We Need To Keep Asking Qs Until We Finally Get Some As!

The apparent connections of athletes and achievers to ALS are mystifying and tragic. We must continue to ask the questions publicly and relentlessly until some answers are found.

Or do perhaps pay more attention when ALS steals an athlete than an engineer or a homemaker? So many questions. So few answers.

The Gazette

Montreal

by Jill Barker

January 18, 2011

Unravelling sports' links to ALS

Susceptible football, soccer, golf and baseball players are disproportionately likely to develop the disease, but no one knows why

Read more: http://www.montrealgazette.com/news/Unravelling+sports+links/4124581/story.html#ixzz1BO3AQEUW

It's A Small World, After All

Sorry to get you humming. Anyway, here's an op-ed about people with ALS and the redeeming social value they find in Facebook --

http://www.citizen-times.com/apps/pbcs.dll/article?AID=2011301020009

If there were ever a disease that screamed for smart use of online communication and support, it's ALS.

Are You Ready For Some...

...ALS Awareness!

http://www.youtube.com/watch?v=iCmTnjEdZy4





Keep strong and journey on...

Did Vice President Biden Ask What The Red Wristbands Are About?

We hope so!

And in the video below, hear what Senator Murkowski has to say about 48 seconds from the end!

Yesssssss!

Just Suck It Up

...and fight harder and smarter to raise awareness and research efforts to figure out the mystery of ALS so that we stop losing such fine human beings!

ALS Advocacy Survey Results Are Available

Thanks to all who took the time to participate.

Click here to download results document.

The comments are interesting, and there are certainly some diverse ideas. Let's hope that they add some new energy and perspectives that will give some punch to the fight against ALS 2011!

If anyone would like to receive the plain old pdf, please let me know and I'll be glad to send it along.

Thank You, Tony Proudfoot

When an athlete is cut down by ALS, it is especially cruel. When a broadcaster is cut down by ALS, it is especially cruel. Tony Proudfoot got the double-whammy, yet he decided to use his voice to tell the world about this outrageous disease.

We have lost another powerful advocate.

http://www.montrealgazette.com/sports/Former+CFLer+Tony+Proudfoot+loses+battle+with/4045727/story.html

And the questions persist about athletes and ALS...

http://www.thespec.com/sports/ticats/article/307937--goodbye-tony
It did not take Lou Gehrig’s disease—and the torturous symmetry that his roommate from his Alouette playing days Larry Uteck had also died of it—to demonstrate Tony’s courage and dedication. That was in the bank long ago.

People With ALS Deserve A Happier New Year Than This

The following was posted on the ALS forum at www.patientslikeme.com:



People with ALS deserve a more respectful salutation than, "Dear Consumer," and a better approach to quality homecare.

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?