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, July 31, 2010

Wednesday, July 21, 2010

We Need Another Giant Leap For Mankind

41 years ago today...

41 years before that, in 1928, Lou Gehrig was an emerging baseball superstar. The letters "ALS" had never even crossed his mind.

Today those letters don't cross enough minds. Our nation needs a sense of urgency and innovation that will put an end to Lou Gehrig's Disease.

In the last 41 years since we sat glued to our televisions watching Neil Armstrong, over a quarter million Americans have died difficult deaths from ALS. Where is our national sense of urgency? Where is our innovation?

Tuesday, July 20, 2010

People Need To Know...

"People need to know that the disease is still out there, and maybe more common than previously realized."


Saturday, July 17, 2010

Trust Me, Tom Watson Has Said More Difficult Farewells

Tom Watson's words, "Damn this disease, damn it," ring in every heart that has ever lost a loved one to ALS.

We loved watching you at Saint Andrew's, Tom, and we'll welcome you back home to continue our unfinished business against ALS.

Watch The Video

"ALS is not an incurable disease. It's an underfunded disease."

Friday, July 16, 2010

With ALS, It's So Much DME, So Little Time

Letter from American Association for Homecare regarding competitive bidding --

Hoosiers, Mark Your Calendars

We are very pleased that ALS TDI is bring its ALS Research 101 to Indianapolis on Tuesday, August 24. Especially encouraging is that the new leadership at the ALS Association Indiana Chapter is helping to get the word out to their patients and friends of this excellent opportunity to learn more about some of the current science going on at ALS TDI and to interact with a scientist. This is a model of two good organizations shaking hands and keeping the focus on their patients, and it's a refreshing approach.

If you are nearby, we hope to see you there. If you have friends and relatives in Indiana or know of any Hoosiers who might have an interest in science or ALS, please help spread the word.

The presentation will take place at the new Indianapolis Marion County Central Library (and it will also be a good opportunity to check out the digs. Now if we could only raise as much for ALS causes as that library cost!).

Here is the ALS TDI blurb --

The ALS Therapy Development Institute (ALS TDI) will be bringing its free ALS Research 101 seminar to Indianapolis on Tuesday, August 24th,. Dr. Steve Perrin, ALS TDI’s Chief Executive Officer and Chief Scientific Officer, will lead the presentation and discussion. Come learn more about this world-class non-profit biotech’s plan, approach and progress in discovering treatments for today’s patients.

Following a short presentation, Dr. Perrin will lead a discussion on the following topics of interest to people living with ALS today: ALS genetics, drug research, clinical trials, biologics, biomarkers, stem cells and caregiver support.

To register to attend, please visit or contact Jessica Sullivan at or 617-441-7238.

Monday, July 12, 2010

Thanks, CVS

Just had a tweet come through from that CVS and customers raised over $4 million for ALS research in their recent point-of-sale campaign. They also raised a lot of awareness among their many customers. That is priceless.

Friday, July 9, 2010

Scientific Americans With ALS Take Science Into Their Own Hands

Here's an interesting new piece in Scientific American about ALS patients pursuing off-label use of readily available products --

Monday, July 5, 2010

Period For Comments Re VA Disability for Vets With ALS

This just came through on twitter from @disabilitygov --

VA seeks comments on proposal to change schedule for rating disability for ALS or Lou Gehrig's disease

[Federal Register: June 23, 2010 (Volume 75, Number 120)]
[Proposed Rules]
[Page 35711-35712]
From the Federal Register Online via GPO Access []
38 CFR Part 4
RIN 2900-AN60

Schedule for Rating Disabilities; Evaluation of Amyotrophic
Lateral Sclerosis
AGENCY: Department of Veterans Affairs.
ACTION: Proposed rule.
SUMMARY: The Department of Veterans Affairs (VA) proposes to amend its
Schedule for Rating Disabilities by revising the evaluation criterion
for amyotrophic lateral sclerosis (ALS) to provide a 100-percent
evaluation for any veteran with service-connected ALS. This change is
necessary to adequately compensate veterans who suffer from this
progressive, untreatable, and fatal disease. This change is intended to
provide a total disability rating for any veteran with service-
connected ALS.
DATES: Comments must be received on or before July 23, 2010.
ADDRESSES: Written comments may be submitted through
; by mail or hand-delivery to the Director,
Regulations Management (02REG), Department of Veterans Affairs, 810
Vermont Ave., NW., Room 1068, Washington, DC 20420; or by fax to (202)
273-9026. Comments should indicate that they are submitted in response
to ``RIN 2900-AN60-Schedule for Rating Disabilities; Evaluation of
Amyotrophic Lateral Sclerosis.'' Copies of comments received will be
available for public inspection in the Office of Regulation Policy and
Management, Room 1063B, between the hours of 8:00 a.m. and 4:30 p.m.,
Monday through Friday (except holidays). Please call (202) 461-4902
(this is not a toll-free number) for an appointment. In addition,
during the comment period, comments may be viewed online through the
Federal Docket Management System (FDMS) at
FOR FURTHER INFORMATION CONTACT: Thomas J. Kniffen, Chief, Regulations
Staff (211D), Compensation and Pension Service, Veterans Benefits
Administration, Department of Veterans Affairs, 810 Vermont Avenue,
NW., Washington, DC 20420, (202) 461-9725. (This is not a toll-free
SUPPLEMENTARY INFORMATION: VA proposes to amend its Schedule for Rating
Disabilities (38 CFR part 4) by revising the evaluation criterion for
ALS under diagnostic code 8017 in Sec. 4.124a, the schedule of ratings
for neurological conditions and convulsive disorders. Currently, the
schedule provides only a single criterion for ALS, a minimum disability
evaluation of 30 percent. We propose to remove this criterion and
replace it with a minimum disability evaluation of 100 percent.
Secretary has authority to make this amendment pursuant to 38 U.S.C.
ALS, also known as Lou Gehrig's disease, is a motor neuron disease
that results in muscle weakness leading to a wide range of serious
disabilities, including problems with mobility. It often affects the
muscles that control swallowing, leading to the possibility of
aspiration (the inspiratory sucking of fluid into the airways) and
pneumonia. It eventually paralyzes the respiratory muscles, and the
most common cause of death in ALS is respiratory failure. ALS is a
terminal illness; the life expectancy of a person with ALS ordinarily
ranges from about 3 to 5 years after diagnosis. Fifty percent of
patients die within 3 years of diagnosis, about 20 percent live 5
years, and 10 percent survive for 10 or more years. See
; http://
; and
ALS is rated under 38 CFR 4.124a, diagnostic code 8017, which
currently provides a minimum disability evaluation of 30 percent.
However, the guidelines in 38 CFR 4.120 (Evaluations by comparison)
direct that disability from neurologic conditions be rated in
proportion to the impairment of motor, sensory, or mental function.
Therefore, any level of evaluation, including 100 percent, can
currently be assigned for ALS under diagnostic code 8017. However,
individuals with ALS have a rapidly deteriorating course of illness and
quickly reach a level of total disability. Providing a 100-percent
evaluation in all cases would obviate the need to reassess and
reevaluate veterans with ALS repeatedly over a short period of time, as
the condition worsens and inevitably and relentlessly progresses to
total disability. Therefore, we propose to change the minimum
evaluation for ALS from 30 to 100 percent. Although ALS may not be
totally disabling at the time of diagnosis or when VA compensation is
claimed for the condition, ALS is a seriously disabling, rapidly
progressive, untreatable, and fatal condition.
VA's schedule of ratings for neurological conditions and convulsive
disorders provides a 100-percent disability evaluation for certain
other motor neuron diseases that progressively lead to disability or
death. See 38 CFR 4.124a, Diagnostic Codes 8005 (Bulbar palsy), 8105
(Sydenham's chorea of the ``progressive grave type''), and 8106
(Huntington's chorea). Given that ALS is a rapidly progressing
neurodegenerative disease and that many of its disabling effects are
similar to other neurological disorders that VA rates at 100 percent,
we propose to compensate veterans with ALS similarly. The 100-percent
rating would ensure that veterans with ALS are evaluated adequately and
would eliminate any delay in reaching an appropriate level of
compensation as their disease rapidly progresses.
In addition, we propose to add a note to consider the need for
special monthly compensation, which will be quite a common need in
these veterans.
Paperwork Reduction Act
This document contains no provisions constituting a collection of
information under the Paperwork Reduction Act of 1995 (44 U.S.C. 3501-
Regulatory Flexibility Act
The Secretary hereby certifies that this proposed rule would not
have a significant economic impact on a substantial number of small
entities as they are defined in the Regulatory Flexibility Act (RFA), 5
U.S.C. 601-612. This amendment would not significantly impact any small
entities. Therefore, pursuant to 5 U.S.C. 605(b), this amendment is
exempt from the initial and final regulatory flexibility analysis
requirements of sections 603 and 604.
[[Page 35712]]
Executive Order 12866--Regulatory Planning and Review
Executive Order 12866 directs agencies to assess all costs and
benefits of available regulatory alternatives and, when regulation is
necessary, to select regulatory approaches that maximize net benefits
(including potential economic, environmental, public health and safety,
and other advantages; distributive impacts; and equity). The Executive
Order classifies a ``significant regulatory action,'' requiring review
by the Office of Management and Budget (OMB) unless OMB waives such
review, as any regulatory action that is likely to result in a rule
that may: (1) Have an annual effect on the economy of $100 million or
more or adversely affect in a material way the economy, a sector of the
economy, productivity, competition, jobs, the environment, public
health or safety, or State, local, or tribal governments or
communities; (2) create a serious inconsistency or otherwise interfere
with an action taken or planned by another agency; (3) materially alter
the budgetary impact of entitlements, grants, user fees, or loan
programs or the rights and obligations of recipients thereof; or (4)
raise novel legal or policy issues arising out of legal mandates, the
President's priorities, or the principles set forth in the Executive
The economic, interagency, budgetary, legal, and policy
implications of this proposed rule have been examined, and it has been
determined not to be a significant regulatory action under Executive
Order 12866 because it is unlikely to result in a rule that may raise
novel legal or policy issues arising out of legal mandates, the
President's priorities, or principles set forth in the Executive Order.
Unfunded Mandates
The Unfunded Mandates Reform Act of 1995 requires, at 2 U.S.C.
1532, that agencies prepare an assessment of anticipated costs and
benefits before issuing any rule that may result in the expenditure by
State, local, and tribal governments, in the aggregate, or by the
private sector, of $100 million or more (adjusted annually for
inflation) in any 1 year. This proposed rule would have no such effect
on State, local, and tribal governments, or on the private sector.
Catalog of Federal Domestic Assistance Numbers and Titles
The Catalog of Federal Domestic Assistance program numbers and
titles for this proposal are 64.104, Pension for Non-Service-Connected
Disability for Veterans, and 64.109, Veterans Compensation for Service-
Connected Disability.
Signing Authority
The Secretary of Veterans Affairs, or designee, approved this
document and authorized the undersigned to sign and submit the document
to the Office of the Federal Register for publication electronically as
an official document of the Department of Veterans Affairs. John R.
Gingrich, Chief of Staff, Department of Veterans Affairs approved this
document on June 17, 2010 for publication.
List of Subjects in 38 CFR Part 4
Disability benefits, Pensions, Veterans.
Dated: June 18, 2010.
William F. Russo,
Director of Regulations Management, Office of the General Counsel.
For the reasons set out in the preamble, 38 CFR part 4, subpart B,
is proposed to be amended as set forth below:
1. The authority citation for part 4 continues to read as follows:
Authority: 38 U.S.C. 1155, unless otherwise noted.
Subpart B--Disability Ratings
2. In Sec. 4.124a, revise diagnostic code 8017 to read as follows:
Sec. 4.124a Schedule of ratings--neurological conditions and
convulsive disorders.
* * * * *
8017 Amyotrophic lateral sclerosis............................ 100
Note: Consider the need for special monthly compensation.
* * * * *
[FR Doc. 2010-15169 Filed 6-22-10; 8:45 am]

The Competitive Bidding Debate Regarding DME Continues

The ALS Association position is cited in this article --

Sunday, July 4, 2010

Thanks For Being A Great Advocate, Nancy O'Dell

Today Nancy O'Dell tweeted asking (rhetorically, I'm sure) if folks had big plans for the holiday.

ALSadvocacy replied to her that it's the 71st anniversary of Lou Gehrig's farewell.

Nancy O'Dell (who lost her Mom to ALS, too) retweeted that to her 47,000+ followers. Perhaps some of them will retweet to their followers. Nancy O'Dell just told a whole lot of people about an important day for us to remember in the fight against ALS.

You're a good egg, Nancy.

July 4, 1939

Thursday, July 1, 2010

Thanks, MLB, For Stepping Up To The ALS Awareness Plate Once More

A year ago the world was buzzing about Lou Gehrig's Disease because of the wonderful 4 ALS effort conceived by Michael Goldsmith and delivered by MLB on last July 4 -- the 70th anniversary of Lou Gehrig's farewell speech.

Again this year Lou Gehrig will be remembered at baseball parks throughout the country on our nation's birthday.

The buzz isn't as loud this year and Michael Goldsmith isn't alive to throw out another pitch, but MLB is still remembering Lou Gehrig and a disease that has persisted to take our best and brightest for far too many years.

Thanks, Commissioner Selig, for remembering and continuing the fight.

Vuvuzelas to Defeat ALS?