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.

Sunday, February 27, 2011

Nobody Wants To Sign Up For This Game Of Musical Chairs

We hate to associate the word "rare" with ALS. It's not so rare if you pay attention. Nonetheless, it does fall into that legal category in the U.S. because of a definition in the Rare Disease Act of 2002 -- "any disease or condition that affects less than 200,000 persons in the United States."

Picture a huge ALS game of musical chairs. There are perhaps around 20,000 people in the room sitting in 20,000 chairs. The music starts. The people get up and circle the chairs. In a year we jam 6,000 more people in that room. When the music stops, Mother Nature has a grim way of dealing with the 6,000 people without chairs.

This cruel game goes on year after year after year after year after year. The few chairs in the room don't mean that ALS isn't a significant problem. The small number of chairs means that ALS is a huge problem. The flow of new faces and the loss of life with this disease is staggering. The "rare" definition simply doesn't tell the story. Taking a snapshot of the chairs doesn't tell the story. Each chair belongs to a lot of victims.


Thursday, February 24, 2011

We Would Like To Thank The Academy


There is an ALS entry in the AAN's Neuro Film Festival!

Here is the short subject, "I'm Still With You" --
http://patients.aan.com/neurofilmfestival/index.cfm?event=vote:video.view&film=195


Please vote!


Here is more on the film festival --



Please vote for the ALS entry. Top entries are to be screened at the big meeting of neurologists in Honolulu (notice how they never pick Fargo?) in April. This would truly help get ALS on the radar of a lot of important physicians, and it's just a great project for them to sponsor.

There Are Some Good Magazines Left

Some of us have a habit of stuffing unread magazines in briefcases and then catching up on reading in airports and on flights. Last night the last one in my stack was the recent edition of Neurology Now, and I simply can't say enough good things about this magazine for those interested in ALS.

The articles and even the ads are informative, and every issue touches some aspects of ALS.

It's worthwhile reading, and it's proof that sometimes the best things in life are free (including the print edition).

http://journals.lww.com/neurologynow/pages/default.aspx

Enjoy. Thanks, American Academy of Neurology, from many of us interested in ALS.

Thursday, February 17, 2011

Sometimes You Read A Quotation That Just Hits Home In The Fight Vs ALS

"Don't confuse routine with commitment." Bill Parcells

Action Item from MDA

Following is from an email received from the MDA advocacy department:

http://www.mda.org/advocacy/bills.html

H.R. 1 proposes cuts to public health programs which affect the health of millions of Americans. The cuts to HHS agencies in the House 2011 budget proposal would remove $1.6 billion from the NIH; $755 million from the CDC; $50 million from the Maternal and Child Health Block; $400 million from the National Science Foundation; and $222 million from the FDA.

If enacted, this budget cut will result in job losses, slow down the progress towards finding much-needed new therapies, and harm the United States’ global edge within the biomedical field.

Friday, February 11, 2011

Let's Go Viral With This

Here is a great lesson in ALS. Especially significant is the fact that it was developed by a man with ALS. That speaks volumes about how talented achievers with all their marbles use technology to help compensate for all that ALS has stolen from their bodies.

How about passing this along to some people who need to learn about ALS? It would be perfect for kids. Then ask them to pass it along.



Thursday, February 10, 2011

Twitter Was Worth A Lot To ALS Today

Yesterday @PhRMA (an organization of major pharmaceutical research and manufacturing organizations) tweeted about its new chart pack http://www.phrma.org/sites/default/files/159/phrma_chart_pack.pdf
Very interesting.

@ALSadvocacy tweeted back that we need some ALS success charts in the next chart pack.

Today @PhRma tweeted back with a link to this gracious response --
http://www.phrma.org/catalyst/searching-success#

These exchanges are watched by tens of thousands of people who see the tweets and the retweets. Many important people were reminded about ALS today.

Tuesday, February 8, 2011

There Are Many Ways To Find One's Voice...


...even when ALS has stolen the ability to speak.

http://armylive.dodlive.mil/index.php/2011/02/facebook-allows-soldiers-to-tell-their-story/

It's well worth a click and a read for many reasons.

We Need A Lou Gehrig Google Doodle On July 4





In memory of Michael Goldsmith who made July 4 a very special day for ALS awareness, who can make a Lou Gehrig Google Doodle happen?









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


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."

Monday, February 7, 2011

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.

Saturday, February 5, 2011

NFL ALS Roll Call

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
Bob Hohn

There are thousands more who have played college football.

This mystery needs to be solved!

p.s. If anyone knows of other NFL players who have been stricken with ALS, please let me know. Thanks.

While The Eyes Of The World Are On American Football


Let's remind everyone of the important facts about the high number of football veterans with ALS. It's a concern. Is it a clue? We spend millions of dollars on food and tickets and advertising and corporate hospitality this weekend. We need to spend some on ALS research to get to the bottom of this disease, too. We need to fight it as fiercely as we want the Packers and the Steelers to fight it out on Superbowl Sunday. It's much more than a game.


Kevin Turner, a bruising fullback who spent nine seasons with the Philadelphia Eagles and New England Patriots, spends a lot of time thinking about his life - or more accurately the life he has left after being diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease.

A recent study has linked ALS to brain trauma with NFL players having an eight times higher risk of contracting the disease.

"In 1997 on a kickoff I took a hit to the head and found myself asking a team mate are we in Green Bay or Philly," said Turner. "I played the whole time but I can't recall ever getting treatment and I practiced and played next week.

"We need to start taking those things seriously and treating the most important organ in your body like we do our knees."

Friday, February 4, 2011

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).

Young Man With ALS Meets Young Man Who Can Do Something About ALS