ALS Advocacy

ALS Advocacy
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.

Saturday, January 30, 2010

The Ultimate ALS Awareness Display Is Going To Washington!

http://webfl.alsa.org/site/PageServer?pagename=FL_PiecebyPiecetoDc

Following is Verbatim From The January 28, 2010, Federal Register


[Federal Register: January 28, 2010 (Volume 75, Number 18)]
[Notices]
[Page 4568-4569]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr28ja10-66]

-----------------------------------------------------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[30Day-10-09BR]


Agency Forms Undergoing Paperwork Reduction Act Review

The Centers for Disease Control and Prevention (CDC), Agency for
Toxic Substances and Disease Registry (ATSDR) publishes a list of
information collection requests under review by the Office of
Management and Budget (OMB) in compliance with the Paperwork Reduction
Act (44 U.S.C. Chapter 35). To request a copy of these requests, call
the CDC Reports Clearance Officer at (404) 639-5960 or send an e-mail
to omb@cdc.gov. Send written comments to ATSDR Desk Officer, Office of
Management and Budget, Washington, DC 20503 or by fax to (202) 395-
5806. Written comments should be received within 30 days of this
notice.

Proposed Project

Registration of Individuals with Amyotrophic Lateral Sclerosis
(ALS) in the National ALS Registry--New--Agency for Toxic Substances
and Disease Registry (ATSDR).

Background and Brief Description

On October 10, 2008, President Bush signed S. 1382: ALS Registry
Act which amended the Public Health Service Act to provide for the
establishment of an Amyotrophic Lateral Sclerosis (ALS) Registry. The
activities described are part of the effort to create the National ALS
Registry. The purpose of the registry is to: (1) Better describe the
incidence and prevalence of ALS in the United States; (2) examine
appropriate factors, such as environmental and occupational, that might
be associated with the disease; (3) better outline key demographic
factors (such as age, race or ethnicity, gender, and family history of
individuals who are diagnosed with the disease) associated with the
disease; and (4) better examine the connection between ALS and other
motor neuron disorders that can be confused with ALS, misdiagnosed as
ALS, and in some cases progress to ALS. The registry will collect
personal health information that may provide a basis for further
scientific studies of potential risks for developing ALS.
During a workshop held by The Agency for Toxic Substances and
Disease Registry (ATSDR) in March 2006 to discuss surveillance of
selected autoimmune and neurological diseases, it was decided to
develop a proposal to build on work that had already been done and
coordinate existing datasets to create a larger database, rather than
to start from scratch with medical records review and physician
reporting. Four pilot projects were funded to evaluate the accuracy and
reliability of existing data from the Center for Medicare and Medicaid
Services (CMS) and various datasets from the Veterans Administration.
Preliminary results indicate that additional ways to identify cases of
ALS will be necessary to increase completeness of the registry.
Therefore, ATSDR developed a Web site where individuals will also have
the opportunity to provide additional information on such things as
occupation, military service, and family history of ALS, which is not
available in existing records.
The registration portion of the data collection will be limited to
information that can be used to identify an individual to assure that
there are not duplicate records for an individual. Avoiding duplication
of registrants due to obtaining records from multiple sources is
imperative to get accurate estimates of incidence and prevalence, as
well as accurate information on demographic characteristics of the
cases of ALS.

[[Page 4569]]

In addition to questions required for registration, there will be a
series of short surveys to collect information on such things as
military history, occupations, and family history that would not likely
be available from other sources.
This project proposes to collect information on individuals with
ALS which can be combined with information obtained from existing
sources of information. This combined data will become the National ALS
Registry and will be used to provide more accurate estimates of the
incidence and prevalence of disease as well as the demographic
characteristics of the cases. Information obtained from the surveys
will be used to better characterize potential risk factors for ALS
which will lead to further in-depth studies.
The existence of the Web site will be advertised by ATSDR and
advocacy groups such as the Amyotrophic Lateral Sclerosis Association
(ALSA) and the Muscular Dystrophy Association (MDA). There are no costs
to the respondents other than their time. The estimated annualized
burden hours are 2300.

Estimated Annualized Burden Hours
----------------------------------------------------------------------------------------------------------------
Number of Average burden
Forms for ALS respondents Number of responses per per response
respondents respondent (in hours)
----------------------------------------------------------------------------------------------------------------
Validation questions...................................... 6,000 1 2/60
Registration of ALS cases................................. 4,667 1 7/60
Cases of ALS completing 1-time surveys.................... 2,334 6 5/60
Cases of ALS completing twice yearly surveys.............. 2,334 2 5/60
----------------------------------------------------------------------------------------------------------------


Dated: January 22, 2010.
Maryam I. Daneshvar,
Acting Reports Clearance Officer, Centers for Disease Control and
Prevention, Agency for Toxic Substances and Disease Registry.
[FR Doc. 2010-1718 Filed 1-27-10; 8:45 am]
BILLING CODE 4163-18-P

Saturday, January 23, 2010

Orlando Thomas - Much Younger Than A Vikings Quarterback Yet Benched By ALS












Here is some good reading for an NFL playoff weekend --


This would be an excellent couple of weeks for us to tell others about all of the NFL athletes who have been stricken with ALS. Is it an occupational hazard? Unfortunately we've not retained the data and the clues to figure it out. In any case, when an athlete gets Lou Gehrig's Disease, it gives us a tragic reminder about the rapid and difficult damage that the disease delivers every day.

Ravens and Vikings in the Superbowl would have been a great opportunity for ALS awareness since each team has a young alumnus dealing with the disease today.

Let's hope that the Vikings help the Orlando Thomas story continue in the press through Superbowl Sunday and beyond.

Here's my NFL ALS list. I'm all ears if anyone knows 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

Wednesday, January 20, 2010

We Look Forward To New Communications Energy At ALSA

http://www.prweb.com/releases/ALS_Association/Gordon_LaVigne/prweb3447054.htm

The ALS Association, the nation’s leader in the fight against the disease ALS (amyotrophic laterals sclerosis) announced today that it has appointed Gordon S. LaVigne as chief development and communications officer.
...
In this position, LaVigne is responsible for managing all revenue producing activities and external relations that promote awareness about ALS and support the mission of The Association.
...
He will work out of The Association’s new headquarters in Washington, D.C.

Talk about a job with a huge upside potential! Welcome, Mr. LaVigne, to the battle against an extremely challenging "A" disease that urgently needs a creative and aggressive approach to make the world aware.

Monday, January 18, 2010

WTG, Dutch Bros.

It's not just about the fundraising. The visibility that this effort gives to ALS is priceless.

Friday, January 15, 2010

THIS Is An ALS Advocate - Steve Franks

Please hear Steve's words here --
http://www.facebook.com/video/video.php?v=1312127412122

Please see the results of Steve's work here --
http://webfl.alsa.org/site/PageServer?pagename=SP_stories

Steve is not only the ultimate volunteer, he is also the ultimate advocate.

Steve Franks is a winner in many ways.

Monday, January 11, 2010

Thursday, January 7, 2010

Stimulus Funds Find Their Way to ALS-Related Projects

The following link from the ALS Association has some interesting data regarding $34 million in two-year stimulus grants for neurological projects related to ALS:

https://ssl.capwiz.com/alsa/attachments/12_09_09_ARRA_Funding__Project_Names_.pdf

Here's hoping that these funds are as productive as the $50 billion (with a b) taxpayer investment in General Motors seems to have been. If GM can turn a profit in 2010, can we not figure out how to cure ALS in 2010?

Friday, January 1, 2010

Is The Vision A World Without ALS Or Simply 4.5% Of The World Without ALS?


Following is from a year-end email sent out yesterday from an ALS not-for-profit:
"Every 90 minutes someone is diagnosed with ALS and every 90 minutes another person loses their fight against ALS. Make the next 90 minutes count – Please donate today!?
The "90 minutes" concept is based on an assumed 5840 new ALS diagnoses (and funerals) in the United States annually.

The United States contains only 4.5% of the world's population.

Did people who read that email understand that every 90 minutes someone in the U.S. plus 22 other people are being slapped with a motor neuron disease diagnosis? Perhaps more accurate and compelling messages might be:
Every four minutes someone is diagnosed with ALS and every four minutes another person loses his or her fight against ALS. Make the next four minutes count. Please donate now before the next person hears the dreadful diagnosis!
or
In the time it took for you to read this email, someone heard a doctor say, "You have ALS."
or
Today 356 families will be burying loved ones who have died from ALS.
or
Happy New Year. In 2010, an estimated 130,000 people will learn that they have ALS.
ALS is a large global problem. Americans are not the only someones. Is our vision a world without ALS or just 4.5% of the world without ALS?

We're not doing ourselves any favors by underestimating and understating the problem.