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.

Tuesday, August 24, 2010

Thanks, Sarah Fisher and Dollar General!



From a press release hot off the presses...



FISHER TO CARRY THE COLORS OF "CAREY’S HOPE" AT CHICAGO AND KENTUCKY
by Sarah Fisher on Tuesday, August 24, 2010 at 10:07am
Indianapolis, IN (Aug. 24, 2010)-Sarah Fisher, driver/owner of Sarah Fisher Racing (SFR), announced today that she will be sporting a new look on the rear wing of her No. 67 Dollar General Honda powered Dallara for the next two races of the IZOD IndyCar ® Series season, but for a very special reason.

In January 2010, Carey Hall, owner of Hall's Motorsports Refinishing (HMR), painter for Fisher's team in Indianapolis and fueler for SFR since its inception in 2008, was diagnosed with ALS. According tothe ALS Association, "Amyotrophic Lateral Sclerosis (ALS) is aneurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include speech swallowingor walking difficulty."

Fisher hopes that by proudly displaying the Carey's Hope logo this weekend, she will raise awareness of the horrible disease and raise funds to help Carey and his family in their battle.

"Dollar General and SFR are one big team that works together and supports each other during times of need," said Rick Dreiling, Dollar General's chairman and CEO. "We stand behind Carey and his family during this challenging time and are committed to helping him win his battle with this disease."

"Carey and his family are a big part of the family here at SFR," said Fisher. "We are very proud of his encouragement and dedication towards getting through this disease and the inspiration he lends to all of us every day. Not only has he been a part of our team and our family, but the family he has will always be a part of our lives. I hope we can help him in a bigger way by getting the word out there and sharing with our sport the intensity and passion the people who support it, have."

In the SFR race shop, located on the Westside of Indianapolis, ALS wristbands are seen on almost every employee. "We're behind him all the way," said Fisher's crew chief, Anton Julian. "Carey has been a vital part of this organization and we're like a big family here. We'll do anything we can to help him through this battle."

Hall resides in Greenwood, Ind. with his wife, Carla, and three sons, Christopher (20), Colin (11) and Cruz (6). Please visit www.careyshope.com to make a donation or to purchase a Carey's Hope decal, t-shirt or an ALS wristband.


Sunday, August 22, 2010

The NFL Speaks

From The Boston Globe by Kay Lazar --
http://www.boston.com/news/health/articles/2010/08/21/ex_patriot_hit_with_als_diagnosis/?page=full

The 41-year-old Alabama native is the 14th former National Football League player known to be diagnosed with the often-fatal and incurable nerve disorder since 1960. That’s a rate eight times higher than the rest of the adult male population.

So many former players have been diagnosed with ALS that the NFL is considering whether to provide benefits to help with their care, league spokesman Greg Aiello told the Globe yesterday.

...

Aiello declined to comment on whether the NFL believes Turner and the other players may have the ALS-like illness linked to repetitive head injuries. ALS “is obviously a very difficult disease and we want to help people,’’ Aiello said, “without respect to whatever the cause may be.’’

Friday, August 20, 2010

The NFL ALS List Grows Once Again

Kevin Turner has been diagnosed with ALS.
http://www.rollbamaroll.com/2010/8/20/1633213/former-alabama-running-back-kevin

The list --
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

Tuesday, August 17, 2010

BU and VA Work Together - It's About More Than Football

http://www.eurekalert.org/pub_releases/2010-08/bumc-buv081710.php

(BOSTON) – The Center for the Study of Traumatic Encephalopathy (CSTE) at Boston University School of Medicine (BUSM) and Department of Veterans Affairs (VA) announced today that they have provided the first pathological evidence that repetitive head trauma experienced in collision sports is associated with motor neuron disease, a neurological condition that affects voluntary muscle movements. The most common form of motor neuron disease is amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. The findings will be published in the September issue of the Journal of Neuropathology and Experimental Neurology (http://journals.lww.com/jneuropath).
...
"When we read reports about cases of the disease being linked to specific activities or experiences, such as the increased risk associated with military service, or this one regarding professional athletes, we are reminded of just how complex of a disorder ALS is. We're hopeful that this new work may shed light on potentially exciting new possibilities for biomarker and therapy development," said Steve Perrin, PhD, CEO and Chief Scientific Officer of the ALS Therapy Development Institute.
...

May I Have Your Husband's Brain?

HBO Real Sports --

While Our Minds Are On Football And ALS Today

Here are some trips down memory lane...

http://als-advocacy.blogspot.com/2010/06/heres-horrible-football-fact.html

http://als-advocacy.blogspot.com/2010/01/orlando-thomas-much-younger-than.html

http://als-advocacy.blogspot.com/2009/10/tick-tick-tick.html

http://als-advocacy.blogspot.com/2008/09/since-our-minds-have-moved-to-football.html

Coincidence or occupational hazard?

Lou Gehrig's Disease Made The Times-Cast



and the story is moving up the most-emailed list.

This is an excellent opportunity to raise the noise level on the need for more ALS research and retention of patient data!

We Have A Conversation-Starter In The New York Times Today!

The New York Times has a very provocative article on head trauma and Lou Gehrig's Disease. I'm sure that thousands of readers are learning how little we really know about ALS and possible head trauma connections. Thank you, New York Times. Let the conversations begin. Let the research increase.

http://www.nytimes.com/2010/08/18/sports/18gehrig.html?hp

Saturday, August 14, 2010

If You Can't Cure It, Then This Man Can Outsmart It!

This speaks volumes about the courage and ingenuity of a man with ALS --


Wednesday, August 11, 2010

ALSA Advocacy Call To Action

From an email from the ALSA Advocacy Department --


Advocate for a Treatment this August!

As Congress heads home for their summer recess (mid-August to mid-September), we need your help to double funding for the ALS Research Program (ALSRP) at the Department of Defense. This vital program is specifically designed to find a reatment for ALS.

The House Defense Appropriations Subcommittee recently voted to increase funding for the ALSRP to $10 million, a more than 30% increase over last year! While this is great news, much more must be done. Last year's funding of $7.5 million is expected to only fund four projects. And that’s why we need your help. We want the Senate to double funding to $15 million for the program when they return to Washington in September.

In order to accomplish this goal, ALS Association Chapters and advocates across the country are meeting with Senators throughout the recess to build support for the ALSRP. But your Senators need to hear from you! In fact, your outreach will send a loud and clear message to Senators that people with ALS all over the state need a treatment today. That we don’t have time to wait. That more funding is needed!

Please visit the Advocacy Action Center of our website (
http://capwiz.com/alsa/home/) and urge your Senators to provide $15 million for the ALSRP in 2011. And contact them today. While the recess begins this week and will continue until mid-September, don’t wait to email your Senators. Contact them today and help find a treatment and cure for ALS!


Thank you!
Editorial comments:
Since we asked for $15 million for this DOD research from both Congresspeople and Senators on Advocacy Day on Capitol Hill in May, it appears that the House decided to give our DOD ALS Research Program request a $5 million haircut. They pick the strangest times to get frugal! When you write your Senators, please keep in mind that you can edit the template message however you think best to convey your expectations of your Senators ;-)


http://alsspreadtheword.blogspot.com/2010/08/what-is-wrong-with-this-picture.html



Saturday, August 7, 2010

Tony Judt RIP - A Very Brave Man

http://www.time.com/time/nation/article/0,8599,2009254,00.html

Tony Judt, whose death was reported today, was a historian of the very first order, a public intellectual of an old-fashioned kind and — in more ways than one — a very brave man.


Please take a moment and Google "Tony Judt" and look at the News links.

ALS stinks.