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, February 28, 2009

Who Are Those People With The Fancy Wheelchairs?

For those who are planning travels to Washington, DC, for the ALS Advocacy Day in May, please consider some visible indications of why you're there.

When PALS converge on Washington, there should be no doubt to people on the street and in elevators and in offices and restaurants and airports that these are the ALS people.

Friday, February 27, 2009

Fire Up the TV - Dr. Gupta Is Talking About ALS

From The Fight Against ALS (on Facebook Causes)... a heads-up on Housecalls --

CNN to Air Report on New ALS Gene: 7:30 a.m. ET on February 28
CNN to Air Report on New ALS Gene Discovered by ALS Association Consortium CNN is expected to air a report by Medical Correspondent Judy Fortin on the new gene the “Medical Headlines” segment of “House Call with Dr. Sanjay Gupta.” The report will be broadcast at 7:30 a.m. ET on February 28 (Saturday) and on March 1 (Sunday) at the same time. The time and date of this report is subject to change.

Blithe Spirit To Open on Broadway

http://broadwayworld.com/article/BLITHE_SPIRIT_to_Play_at_Shubert_Starting_226_20090226

Here's hoping that Angela Lansbury wins a Tony as best actress in a revival and remembers to mention ALS during her acceptance speech!

Wednesday, February 25, 2009

Anybody Know How To Get Dr. Zeke's Ear Regarding ALS?

http://www.newsweek.com/id/185801

Howard Fineman in Newsweek:
"For now, Zeke is lying low... Don't expect to see him on the talk shows. But health-care lobbyists are aware of his prescriptions even as they meet privately on the Hill to hash out their own strategy. They know that he talks to his brother—and that his brother talks to the president."

In A Four-Year Presidential Term...

almost all people with ALS on inauguration day are gone (buried, not cured) by the next inauguration. They have been replaced by new recruits to this disease.

How do we get on the agenda?

http://www.politico.com/news/stories/0209/19291.html

From Politico, February 25, 2009 --
"President Barack Obama laid out an agenda Tuesday that would do just about everything but cure cancer. Actually, he promised to try that too. "

ALS needs to be visible and on the agenda. It's not there. The ALS "class of 2009" can't wait.

Tuesday, February 24, 2009

Let's Discuss This In Every ALS Not-For-Profit Organization's Boardroom


It's good news for marketing the ALS cause (or bad news if we're not willing to embrace the effort with smart and consistent delivery).

We must do a better job of getting the word out about ALS.

Monday, February 23, 2009

The "Keep Going Hall Of Fame" Seems Perfect For Some Of Our PALS and CALS

This Hall of Fame is just waiting for some of our people who take a licking and keep on ticking! ...and it would make such a great story.

http://kgmb9.com/main/content/view/14365/108/


Entries Wanted for the Energizer Keep Going Hall of Fame

Written by Sunrise on KGMB9 - sunrise@kgmb9.com
February 23, 2009 08:30 AM

National Baseball Hall of Famer, Cal Ripken, Jr. is scouting for all stars with never-quit spirit. He's turned his sights outside the stadium to find everyday people who live their lives with determination, perseverance and a nonstop energy to be the next members of the Energizer Keep Going Hall of Fame.
Ripken, Jr. is helping Energizer make the fourth annual call for entries for the Energizer Keep Going Hall of Fame program. Do you know someone who continually goes above and beyond? Someone who perseveres through life's everyday challenges? Someone who has shown unparalleled determination and tireless spirit? If you know someone who is "… like that Energizer Bunny…" now is your opportunity to honor them. Nominations can be made at
www.energizer.com/halloffame now through March 31, 2009 by submitting an essay about why your candidate "keeps going" and deserves to be in the Keep Going Hall of Fame.
In 2006 Ripken, Jr. was named the first celebrity member and spokesperson of the Energizer Keep Going Hall of Fame. "I am honored be a member of the Keep Going Hall of Fame," said Ripken. "Throughout my career and life I have been constantly inspired by the passion and spirit of those around me. I'm excited to help celebrate others throughout the U.S. with those same qualities."

Dear Mr. President

Yours will never be one of a day's ten letters he reads unless you take a moment to write him...
http://blogs.abcnews.com/politicalpunch/2009/02/dear-president.html

Here's the email link...
http://www.whitehouse.gov/contact/

If you have ALS, explain what it's like to deal with a disease that doesn't give you a fair fight since there's no known cause or cure.

If you're a caregiver, explain what it means to deal with a disease that has great physical and financial demands while you watch your loved one slip away.

If you're a widow or widower or orphan, explain all that ALS stole from you.

If we don't speak up, he won't hear us.

Sunday, February 22, 2009

ALS Meets Broadway... Barbarella Meets ALS

http://www.nytimes.com/2009/02/22/theater/22mcgr.html?pagewanted=1&_r=1&ref=arts

I have a feeling that ALS may just be an inconvenient truth in this one -- one of those diseases known by its initials that sets the ticking clock to allow the play to come to an end.

“Variations” is about a woman who is in many ways the complete opposite of Ms. Fonda — someone who has shut down and is out of touch with herself. Ms. Fonda plays a character named Katherine Brandt, a musicologist who is suffering from amyotrophic lateral sclerosis, or Lou Gehrig’s disease, and is determined before she dies to solve the mystery of Beethoven’s Diabelli Variations: why he spent the last years of his life obsessing over an ever-expanding set of variations on a waltz theme, written by the music publisher Anton Diabelli, that was clunky and banal.



It would be rather spectacular if Jane Fonda could get into the role enough get a case of ALS rage and help the cause.

Tuesday, February 17, 2009

How Does One Start Some 4 ALS Buzz?

Here are some stream-of-consciousness thoughts about advocacy...

May is ALS Awareness Month.

May is the month when hundreds and hundreds of people descend on Washington, DC, to talk to legislators about the ALS problem.

Washington, DC, is the city with one of the best public transit systems in the world.

Given the recent figures regarding the significant NIH research funding increase and the dwindling ALS proportion of NIH funds over the last few years, it's more important than ever that we make sure that people in our nation's capital understand that ALS has not come a long way since 1939 when we heard Lou Gehrig's farewell.


Washington, DC, loves baseball.

July 4 has the potential to be the biggest ALS awareness day in history when Major League Baseball brings its 4 ALS campaign to the world.

So...

How could we make some visible signs of 4 ALS be in Washington starting in May? Is there a way to get WMATA to work with MLB to put some beautiful 4 ALS signage on the outsides of buses and on the insides of Metro cars and stations? Does anybody know how we might make this happen?

This image needs to be everywhere starting in May!

Sunday, February 15, 2009

MND Association Has A Hit

The "Sarah's Story" film gets industry kudos...
http://www.communitynewswire.press.net/article.jsp?id=5485890

If you've not watched it, I encourage you to do so. It's not what you think. Take a deep breath and watch it. And after you watch it, please pass the link along.

http://www.sarahsstory.org.uk/

[It has a warning not to be viewed by those under 15. That should be enough of a "wet paint" sign to get it some added attention, too.]

Saturday, February 14, 2009

People With ALS Have Their Numbers Honored

Lou Gehrig's #4 was the first number to be retired in any sport. The Yankees initiated that honor with Lou.

Now another PALS, the late Coach Scott LeClair, is having his number #23 honored in a different way ...

http://www.witn.com/sports/headlines/39614222.html

GREENVILLE, N.C. – Senior first basemen Brandon Henderson will wear East Carolina’s honorary No. 23 jersey during the 2009 season according to an announcement made by Head Coach Billy Godwin during the program’s annual “Meet the Pirates” fan session, which was held inside the Murphy Center Saturday afternoon.
The No. 23 jersey, which was the number worn by the late ECU Head Coach Keith LeClair throughout his coaching and playing career, became an honorary number for the Pirate baseball program in 2003.

Words That Can Change A Man -- "Whoops! It Wasn't ALS After All, Senator Specter."

From the New York Times

http://www.nytimes.com/2009/02/14/health/policy/14specter.html?ref=science&pagewanted=print

February 14, 2009
Specter, a Fulcrum of the
Stimulus Bill, Pulls Off a Coup for Health Money
By
GARDINER HARRIS

WASHINGTON — For years, Senator Arlen Specter of Pennsylvania has been the National Institutes of Health’s most ardent champion on Capitol Hill. Having survived two bouts with cancer, open-heart surgery and even a faulty diagnosis of Lou Gehrig’s disease, he has long insisted that research that results in medical cures is the best service that government can provide.

But even lobbyists are stunned by the coup Mr. Specter pulled off this week. In return for providing one of only three Republican votes in the Senate for the Obama administration’s $787 billion economic
stimulus package, he was able to secure a 34 percent increase in the
health agency’s budget — to $39 billion from $29 billion.


After money intended for highways, schools and states, it is the largest of chunk of financing in the budget and is almost three times the $3.5 billion first approved by the House. Nearly $2 billion is intended for building and equipment projects at the N.I.H. campus in Bethesda,
Md., as well as at universities across the country. But most of the money will go to pay for as many as 15,000 additional grants submitted by scientists at universities across the country.

The health institutes currently issue 45,000 such grants at an average cost of $360,000 a year. And although most grants are financed for four to five years, administrators said they would give priority to projects that could be completed in two years. House Republican
leaders argued that the health institutes, flooded with cash, would pay for unworthy projects that would create few jobs. But the institutes finance only about 40 percent of grants deemed meritorious, so advocates say that there is a huge backlog of beaker-ready projects.

How Mr. Specter managed his coup is a story of tough bargaining that began in a legislative backroom and took an important turn at a presidential
Super Bowl party. ...

Stimulus Package Information from ALSA

Just some background to put the traditional ALS slice of the NIH pie into perspective before you read on about stimulus boost for NIH...
http://report.nih.gov/rcdc/categories/
Also, more commentary on the NIH pie at http://www.alscounts.com/slog.html

Following is from ALSA Washington, DC, office:

Stimulus Adds $10 Billion for NIH; Will Help to Support ALS Research

The ALS Association won a hard fought victory as Congress will provide an additional $10 billion for the National Institutes of Health (NIH) as part of the economic stimulus plan passed by Congress this evening and expected to be signed into law by President Obama. This represents a nearly 18% increase in funding over 2008 and will help to increase support for ALS research at the NIH, which is the single largest source of ALS research funding in the world. Click
here to read The Association's letter urging support for the increased funding.

Before President Obama took office in January, The Association also reached out to key members of the President's transition team outlining our priorities for the NIH and how the new Administration can support people with ALS in the fight for a treatment. In addition to advocating funding be included in the economic stimulus package, we also urged the new Administration to partner with the ALS community and support innovative programs that provide us with the best opportunities to advance ALS research as quickly as possible. A copy of our comments to the Obama Transition Team can be found
here .

Tuesday, February 10, 2009

Monday, February 9, 2009

ALS Steals Another Advocate - Sean Scott

From ALS TDI --

It is with great sadness that we announce that Sean Forrester Scott, president of the ALS Therapy Development Institute, died today due to complications from amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease). Sean was 39. He announced his own passing in an email to his family and friends. The following are excerpts:

“Hello my friends….If you’re reading this then I am gone... at 39 of this miserable disease that afflicts my family….Just last year I was worried about turning 40. Now it appears I’ll never have the chance….. It’s both surreal and horrifying to watch as muscles fail and with them skills that you spent a lifetime developing simply disappear. I’d trade every minute that I’ve got left for just one more chance to run across the tennis court and crack a forehand….I spent the last decade building an infrastructure to combat this disease. I had declared war on it but in the end it got me first. At a minimum, I think I earned the right to be referred to as KIA and not a victim. I’d prefer that you remember me that way.”

Sean became active with ALS TDI when his mother, Vanna, was diagnosed with the disease in 2001. He quickly became a leader on the research and development team – teaching himself neurobiology, and reading the anthology of publications on potential therapeutics. He developed the information management system used by the research team – allowing for greater collaboration, innovation, and the streamlining of experiments and process. He focused on building the system and infrastructure needed to execute the largest assault possible. With the system built and working, Sean focused on making sure that scientists in the lab had the resources they needed to act on the best ideas quickly, and he sought out the funding needed to speed up the processes. He went on the road and met with everybody that would listen. He encourage all that could to take action. This led him to Augie Nieto and Sharon Hesterlee. The funding provided through the ambitious partnership he brokered between ALS TDI, Augie’s Quest and MDA, accelerated ALS research like never before.

Nancy O'Dell Will Be Dancing With The Stars

http://www.usatoday.com/life/television/news/2009-02-08-dancing-stars_N.htm

Perhaps someone can make her a stunning sequined gown with a "4 ALS" theme. We sure hope she can work the cause into a gig that will give her great visibility.

ALSA 2009 Advocacy Priorities - Take II

From ALSA website

Last item is new since the printed document posted a few days ago. It refers to getting our veterans the benefits to which they are already entitled.

http://www.alsa.org/policy/priorities.cfm?CFID=2621017&CFTOKEN=36027bff9cb607ea-4CDAED11-188B-2E62-805E0D54D8C9EE07

The ALS Association’s 2009 Public Policy Priorities
(February, 2009)
Appropriate $5 million as part of the FY 2010 Labor/HHS Appropriations bill to continue the ALS registry at the Centers for Disease Control and Prevention. On October 8, 2008 the President signed into law the ALS Registry Act (P.L. 110-373), which authorizes the CDC to establish a national ALS patient registry to identify ALS cases in the United States and collect information urgently needed for ALS research. The new law also builds on projects currently underway at CDC designed to determine the most effective and efficient ways to identify ALS cases and to share information. To date, Congress has provided nearly $5 million for the ALS registry projects, including $3 million in FY 2008. In addition, the Senate version of the FY 2009 Labor/HHS Appropriations bill included $5 million for the registry and the House bill included $2.8 million. Funding is needed in FY 2010 to build upon these projects and enable the CDC to implement the ALS Registry Act, including to meet reporting and progress deadlines set by Congress. In addition, this funding will allow CDC to begin to collect information on a broader scale and explore opportunities for the registry to facilitate public health initiatives, epidemiologic studies, and research into biomarkers, risk factors, and clinical studies that identify new treatments for the disease.
Appropriate $5 million to continue the Peer Reviewed ALS Research Program (ALSRP) at the Department of Defense (DOD). Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans are approximately twice as likely to die from ALS as those who have not served in the military. To date, Congress and the DOD have provided a total of $10 million in funding for the ALSRP, including $5 million as part of the FY 2009 DOD Appropriations bill. By appropriating $5 million in funding in FY 2010, Congress can support our military men and women and continue this vital program, which is the only ALS-specific research program supported by the DOD. Unlike many other research efforts, which focus on basic science, the ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist. The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer reviewed. In this way, the ALSRP can help us learn why our nation’s veterans are at greater risk of the disease and take action to protect them and all people whose lives have been touched by ALS.
Pursue initiatives to ensure military veterans with ALS have timely access to health and disability benefits through the Department of Veterans Affairs. In 2008, the Department of Veterans Affairs implemented historic new regulations that establish ALS as a service connected disease, regardless of when or where a person served in the military and regardless of when they were diagnosed following discharge. The regulations provide veterans diagnosed with ALS and their survivors access to benefits that include monthly disability compensation, survivors benefits, adaptive housing and vehicle grants, aide and attendant benefits, and full health care, including prescription drugs and durable medical equipment. While the new regulation affords veterans with ALS an unprecedented level of benefits, veterans nevertheless have experienced difficulties and delays in accessing benefits. The application process can be cumbersome and challenging and veterans may be forced to wait as long as six to twelve months before their claims are processed. Moreover, veterans may not immediately receive the highest level of benefits possible as the process may not recognize the progression of the disease and local VA field stations may not be familiar with ALS or the new regulations. Because ALS is a rapidly progressing disease, with a life expectance of just two to five years, it is vital that veterans have access to the highest level of benefits as soon as possible.
For additional information about our 2008 Priorities, please contact the Advocacy Department at
advocacy@alsa-national.org or 1-877-444-ALSA.

Sunday, February 8, 2009

Anything You Would Like To Share With The President Of The United States?

http://www.whitehouse.gov/contact/

There's a 500 character limit to each message.

We have a lot more than 500 characters who check out this site, so let's send the new administration a lot of 500 character messages.

Say what's on your mind.

Should the President visit with advocates on Advocacy Day?
Should the government do more to address veterans with ALS?
Should the government do more to prevent ALS in veterans?
Should industry receive incentives to discover and develop a cure?
Should healthcare delivery deliver better results for families dealing with ALS?
Should the government take the lead in research?
Should we all be outraged that this disease has gone on for so long?
Should we get a Registry that actually registers all cases of ALS?

The list goes on and on. Speak up, please!

What we have done for the last 140 years hasn't worked to figure out this killer disease. It's time for change.

Saturday, February 7, 2009

From ALSA - Advocacy Day is Coming

Following is from the ALS Association --

Advocacy Day Registration Opens February 9, 2009

The ALS Association is pleased to announce that online registration for the 2009 national ALS Advocacy Day and Public Policy Conference will open at 9am (EST) on
Monday February 9, and will be available on The Association's website at
www.alsa.org/policy/alsday.cfm.

An electronic copy of the 2009 Conference Registration Brochure also will be available on the site or by selecting this
link. The brochure includes a detailed schedule of events for this year's conference, which takes place in Washington, DC May 10-12. Hotel information and details on registration fees, including early bird registration deadlines and how to reserve an ADA accessible hotel room, also can be found in the brochure.


Friday, February 6, 2009

ALSA 2009 Public Policy Priorities



$5 million for ALS Registry funding and $5 million for DOS ALS research.

Tuesday, February 3, 2009

Here is the MLB Press Release - 4♦ALS Awareness



July 4, 2009 -- Mark Your Calendars! Let's Go Out To the Ballgame.

Michael Goldsmith is living proof that people with ALS can get things done. Thank you, Mr. Goldsmith!

From the New York Times --
http://www.nytimes.com/2009/02/03/sports/baseball/03vecsey.html

February 3, 2009
Sports of The Times
Baseball to Focus Attention on Gehrig’s Disease
By
GEORGE VECSEY
Baseball came through.
On July 4, the 70th anniversary of Lou Gehrig’s immortal “luckiest man on the face of the earth” speech, Major League Baseball will help fight the disease that bears the name of its doomed hero. In 15 home ballparks that day, baseball will seek to raise money and awareness of amyotrophic lateral sclerosis, or A.L.S., known as Lou Gehrig’s disease, which currently has no cure. Major League Baseball will announce the details of this program Tuesday. The event is the brainchild of Michael Goldsmith, 57, a law professor in Utah, who was given what he calls a “death sentence” in September 2006, the ominous signs of A.L.S....
IMPORTANT Immediate Action Item --
Please go to http://www.nytimes.com/2009/02/03/sports/baseball/03vecsey.html and read the whole story, then use the email link on the article page to email it to everyone you know. This will not only get the word out, but it will also help the article rise to the top emailed articles in the Times which will move it to the spotlight on the front page.

This is huge.

For your travel planning, here are the likely home teams on July 4, 2009 from the MLB website http://mlb.mlb.com/mlb/schedule/#20090704

Marlins TBD
Nationals 1:05 p.m.
Cubs 1:05 p.m.
Red Sox 1:05 p.m.
Yankees 1:05 p.m.
Reds 1:10 p.m.
Royals 2:10 p.m.
Giants 4:05 p.m.
Phillies 4:05 p.m.
Twins 4:10 p.m.
Indians 4:10 p.m.
Padres 7:05 p.m.
Rangers 8:05 p.m.
Rockies 8:10 p.m.
Angels 9:05 p.m.