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.

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."


Amen.

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 --

http://www.aahomecare.org/associations/3208/files/AAHomecare%20Letter%20Supporting%20HR%203790_071510_FINAL.pdf

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
www.als.net/als101 or contact Jessica Sullivan at jsullivan@als.net or 617-441-7238.

Monday, July 12, 2010

Thanks, CVS

Just had a tweet come through from www.alstherapyalliance.org 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 --