Sit Back, Relax, And Enjoy Your Flight

Every day over 350 people die from ALS globally. Every day. 7 x 52. Even on weekends. ALS takes no holidays.

If a full jumbo jet were to drop from the skies every day, we would find a way to stop the carnage.

Why do we let ALS persist? Why do we sit back, relax, and lead our lives, oblivious to the threat?

Think about that the next time you take your seat on a big plane.

The Message For Today Is...

If you have ALS or if you know anyone with ALS, please encourage him or her to self-enroll in the U.S. National ALS Registry at http://www.cdc.gov/als

It's important. This is a registry that is designed by epidemiologists. The message needs to get to every person with ALS in the United States.

Please help by passing this information along today. Thank you.

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

Here Is A Perspective On A Birthday

Oh, that some creative minds might find effective ways to increase self-enrollment and patient participation in the supplemental surveys for the CDC's ATSDR National ALS Registry!

Here is some perspective on a "birthday" and on keeping our eyes on the prize --

http://alsspreadtheword.blogspot.com/2011/10/its-project-for-petes-sake.html

Let's make this registry work to provide the epidemiological clues that scientists need. Let's not sing until the data speak.

Are The Right Agencies Doing The Right Things?

A perspective on some of the proposed "enhancements" to the CDC's ATSDR ALS Registry...

http://alsspreadtheword.blogspot.com/2011/09/whoa-government-is-moving-too-fast.html

It's troubling to see such expensive "feature-itis" growing from a project that needs to be focused on a successful core mission.

Hot Off The Press - ALS Registry Annual Meeting Summary

The meeting notes from the 2010 annual ALS Registry meeting were put on the CDC's website last week, over nine months after the meeting.

http://wwwn.cdc.gov/als/Download/2010%20ALS%20Annual%20Meeting%20Summary%20Report.pdf

We believe that the 2011 meeting may be happening this week. We hope that it doesn't again take almost a year to see the summary of the proceedings. People with ALS don't have that kind of time to wait!

Here Is An Interesting Trip Down Memory Lane

Remember that on October 8, 2008, President Bush signed the ALS Registry Act into law after literally years of work by ALS advocates and organizations.



Only within the last several months some helpful documtation was added to the CDC's ALS website at https://wwwn.cdc.gov/ALS/ALSResources.aspx .



When you have some relaxing reading time, take a look at the 2009 ALS-MS Annual Meeting Summary Report - PDF file which you can also download here.

As you peruse this report that puts you in the midst of the group guiding the development of the new ALS Registry for the United States, keep in mind that the meeting was held around eight months after the ALS Registry Act had been passed. It was also held sixteen months before the ALS Registry online web portal launch.


Every month represents around 500 American deaths from ALS.

Interesting reading, eh?

Here Is Living Proof That People With ALS Are Bright Lights

Here is an interesting letter that is pertinent to the U.S. national ALS Registry and the substantial advocacy work that has enabled it. It was written by a gentleman with ALS.

http://bit.ly/fN2TCk

Many of us look forward to the response and to some status information on the registry project. People with ALS have all their marbles (and many obviously have a considerable marble count), and they have skin in this substantial government project. This has been described as a well-funded project by the CDC. We all hope that it delivers.

The Plural Of "Testimonial" Isn't "Data"

http://alsspreadtheword.blogspot.com/2011/01/who-would-have-thought-that-this-theme.html

Some further thoughts...

Patients diagnosed with ALS have no great choices of therapies. When you're handed a death sentence by current medical science, you are often willing to roll the dice. Those dice are part hope, part discovery, and part contribution that the next patient may fare better.

So often we see testimonials about something that appeared to work for a patient or two or ten. Others try. Nobody gathers and retains the data so that others may learn whether there is bad that accompanies the good. The testimonials give us hope. We become focused on the good because the original diagnosis of ALS looked so bad.

Every patient who tries any kind of unproven therapy (and they're pretty much all unproven) is urged to track his or her data carefully over time and to share those data in a place where others might benefit from the information. If a therapy doesn't work, that information is as valuable (if not more valuable) as the testimonial of the person who perceived positive results.

Physicians track information, but those medical records will not benefit others unless patients are part of formal clinical trials. Tens of thousands of ALS patients are trying things on their own. Sharing information and tracking it over time will keep future patients who have not even heard of ALS today from reinventing so many wheels.

www.patientslikeme.com supplies a public framework for tracking data that is designed with ALS in mind. If you are a person with ALS or know one, please encourage use of patientslikeme or another web-based mechanism so that data aren't hidden in the shadow of testimonials.

p.s. I apologize for the play on the old quotes from statistics class about the plural of "anecdote" and "data."

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.

And So We Wait Some More

There was obviously an ALS Surveillance Meeting on November 3 (see the pics).

So I asked about the proceedings --
Are any proceedings from the November 3, 2010 ATSDR ALS Surveillance Meeting available to the public? Thank you for any information.

And I got this reply --
Thank you for your interest and support of the National ALS Registry. The 2010 ALS Annual Meeting Summary Report is not available to the public at this time. Once the report has been finalized and approved it will be posted on the ALS Registry website. We anticipate it being completed by late spring or early fall.

If you find that you need further assistance, please feel free to contact the National ALS Registry System Administrator toll-free number at 1-877-442-9719 or email the National Registry System Administrator at ALSSystemAdmin@cdc.gov (9am-6pm ET).

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.

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

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."

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.

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.

That Was The Week That Was

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

Webex Session on ALS Registry Gives Some A for Q and Spawns More Q

https://alsa.webex.com/alsa/ldr.php?AT=pb&SP=MC&rID=60697332&rKey=7f48b8861c3e0651

Below are my questions and the answers to some that I think I heard on the transcript... plus some new questions that the transcript spawned --

· ALSA has published that your algorithms for mining the large administrative databases will identify 80-85 percent of ALS cases. Who are the people in the 15-20 percent who are not found via this process? I assume that there must be whole lot of people diagnosed with ALS who are somehow outside of Medicare, Medicaid, VA, etc. databases.

· One of the Achilles' heels of the many attempts at self-reporting over the years has been the inability to capture the death event in a timely and accurate manner. How does your process capture the death event? Registry data will be matched against the National Death Index periodically. People who fail to update their Quality of Life surveys on the web portal will be suspect, but the moderators did not indicate whether or how such lack of activity would be used to verify a death.

· Suppose a scientific study suggests a new environmental trigger possibility. Please describe the process you will use to expand the Registry to capture data on that possible trigger. Will it be nimble enough to do this quickly? Will additional requests for appropriations be needed to adapt?

· How much has been invested so far on the Registry project? About what proportion of that has been CDC employees’ time? … private-sector contractors?

· As I understand the process, it seems that you will be mining data in a number of administrative databases that are unique to the United States. Should we infer that the infrastructure built for this Registry will not be useful to be leveraged by other countries that might want to emulate the U.S. Registry? Is there any data standard or protocol that will enable scientists to pool data from the U.S. and other countries easily?

· If citizens of other countries are legal residents of the United States and are treated while living here, will their data be included? I could not understand the whether this question or the next question was the one that was asked on the call. The response indicated that the registry is for U.S. citizens only. Then a respondent mentioned that there were some technicalities regarding legal residents and that there would be followup on the question.

· If citizens of other countries are illegal residents of the United States and are treated while living here, will their data be included?

· If the people dealing with coordinating information in the various administrative databases and the online portal have a "is this the same person" question, will they be able to make phone calls to the individuals or sources of the administrative records to resolve the uncertainty, or are they stuck solely with the data in front of them. They don't anticipate a problem given the number of attributes that each database has on a patient.

· Many people with ALS aren't diagnosed until long after onset. Will the Registry data capture anything regarding patients' onset dates?

· Is it correct that the physician does not report anything directly to the Registry? My understanding is that the physician has nothing new to do and that cases will be identified passively from the codes on the normal medical records, Medicare billings, etc. Is that correct? ALS is not a reportable disease and therefore physicians are not required to report it as they are with other diseases such as cancers.

· What is the process for a scientist to get access to Registry data? Are the expenses of dealing with a lot of requests for data already built into the Registry budget?

· Will there be any routine publications of information from the Registry for the general public? Absolutely.

· Does the informal advisory group for the Registry still meet? If so, is it possible to coordinate meeting dates so that the ALS advocacy national meeting receives current information? It seems that in the past the advocates meeting in May has been almost a year behind on status information because of the advisory group meeting in June. Also, is there a reason why both ALS and MS surveillance were included in that advisory group?

And the transcript raised more questions in this enquiring mind --

• There were assurances that deceased people with ALS would be captured via the national databases but not via the web portal. How far back will the registry reach to find dead people in those national databases. If somebody was on Medicare in 1990 and died from ALS, will he or she be included in the registry?
• What would it take to make ALS reportable so that a physician diagnosing a case would simply be required to report it to the CDC?
• The call emphasized that information would be provided to patients. This causes some concerns that general information on ALS will be maintained on yet another website. Will the CDC and ALSA and MDA coordinate so that all three organizations might share content rather than having your taxpayer/donors create and maintain redundant or competing content?
• Are the educational materials on the patient page of the portal related to ALS in general or specifically to the ALS registry? Again, it seems appropriate that this be the go-to site for information on the ALS registry.
• On a similar conference call sponsored by the MDA a few months ago, we heard that the registry was ready to go as soon as OMB approval came through. On this call we heard that there are two more hurdles, the CDC security hurdle and the CDC deployment process. Are there any other hurdles we should know about?
• The state-based surveillance process described an abstract form for state health departments to supply to neurologists. Are neurologists required to respond to such requests?
• Could you please explain exactly what was launched with the soft launch of October, 2009?
• www.cdc.gov/als supplies a link to the NIH information on ALS. NIH materials have asserted for well over ten years that "As many as 20,000 Americans have ALS." When the CDC's ALS registry proves that many more than 20,000 Americans have ALS, will you be able to get the NIH to update their claim, please?
• A feedback feature on the web portal was mentioned. Will the feedback go directly to those responsible for the ALS registry or will it be routed through the general CDC "contact us" process?

Q4 2010 Is Just Around The Corner... Is The ALS Registry Finally Here?

Following is information from the ALS Association Washington, DC Advocacy Office:

ALS Registry Webinar
Tuesday, September 28, 2010
2:30-3:30 pm Eastern

We are pleased to invite you to participate in an interactive webinar on the National ALS Registry on Tuesday, September 28, 2010 from 2:30 to 3:30 pm (Eastern). Leaders from the Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention (ATSDR/CDC) will present the latest news on the Registry as the Agency prepares to launch the Registry’s online web portal, which will permit people with ALS to self-enroll in the Registry.

The webinar is designed specifically for people with ALS and their families to help you prepare for the launch of the web portal. Specifically, the webinar will include:
Background information and an update on the implementation of the Registry and web portal;
A preview of the online web-portal that PALS will access to enroll in the Registry; and
Information about The ALS Association resources that will be available to people with ALS and families, including online resources.
In addition, the webinar will provide you with an opportunity to ask any questions you may have about the Registry and the web portal.

WHEN: Tuesday, September 28 at 2:30pm Eastern
WHAT: National ALS Registry Webinar
HOW to Access the Webinar Presentation:
To join the webinar and view the presentation on your computer, go to:
https://alsa.webex.com/alsa/j.php?ED=140870002&UID=1134170547&PW=NMjMyMzU3YzU3&RT=MiM0

Space is limited to the first 200 participants so please plan to login early to secure your spot.

To join the audio conference: Call-in toll-free number (US/Canada): 866-699-3239 Access code: 827 385 412 Meeting Password: Registry3

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

The Work Of ALS Advocacy Just Got A Whole Lot Harder

How often have we seen a person of influence taking the initiative to wear a Strike Out ALS wristband on national television? Once.

Senator Murkowski, thank you for all that you did behind the scenes to help us get a national ALS Registry and to help us get precious research funds for ALS.

Thank you. You're the best.