NFL Playoffs - All Eyes Could Be On ALS

The Ravens made it to the playoffs, and a Raven staff member and former player is a big motivator for that team, and he has ALS. O.J. Brigance needs to be on every news show and sports show hyping the playoffs. When a strapping athlete is cut down by this disease, it speaks volumes about the need for us (and the us grows when a zillion football fans are watching) to figure out the cause and cure.

Should it be of concern that ALS might be an occupational hazard of professional football?

Here are some names (if you know of others, please submit them in the comments and we'll add to the list) --

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Orlando Thomas
Wally Hilgenberg

This week provides a huge opportunity for some ALS advocacy. A team in the Washington, DC, area is in the playoffs and has a living PALS showing its players the meaning of courage.

Sleepy

P.S. Sleepy also sees a challenge that has plagued ALS advocacy efforts for years. Once a high-profile athlete or celebrity aligns with one of the many ALS not-for-profits for fundraising purposes, for some reason the others seem to drop the awareness opportunities that the athlete can provide on a big stage.

Ok, Packard Center, MDA, ALSA, MND Association, Extra Hands, ALSTDI, and others. Here is an opportunity to spread the word about a startling correlation of NFL players and ALS and a courageous PALS leading his team through the playoffs. The stage is big. It's time to be big enough for a big stage and know what to do with an opportunity... together or indivudually... but don't drop the ball. Just do it. It's not every week when you have a nation glued to the tube like this. We know you didn't plan for a Ravens playoff run in your annual p.r. plans, but you can be nimble and seize the opportunity.

R-E-S-P-E-C-T

Aretha is singing at the inauguration in January.

Here's an idea. Let's get her to become engaged in the ALS cause and go back to DC in May. We could use her at Advocacy Day because ALS sure gets no respect.

Just a little bit would be an improvement.

David Niven Would Be Proud

From the Orlando Sentinel

http://www.orlandosentinel.com/services/newspaper/printedition/friday/localandstate/orl-landing08dec12,0,664544.story

Pilots Carol Ann Garratt of Ocala and Carol Foy of Texas shattered an around-the-world speed record that had stood for 20 years. They also raised $145,000 for research on amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. ... "That mission is accomplished," said Garratt, who spent 18 months planning and $15,000 of her own money on the trip so donations could go to ALS research. "But the ALS mission is ongoing until we find a cure for that disease." ... A flight log and more details on the trip can be found at ALSworldflight.com.

Here's a pic of PALS David Niven in his "Around The World In 80 Days" days. That champagne sure beats Ensure.

Everything Will Be OK

Patrick O'Brien is still hanging on, working hard to finish his documentary. It's such a beautiful story and looks to be an amazing film. He needs all the help he can get to leave a film for his son to know him through. If you think you can help, please visit the Patrick O'Brien Foundation . I am not the only big Fan of this Man. ALS is being documented endlessly with this talented eye veiwing the finder of his wideangle lens. This is truly one serious ALS patient and advocate. It's my hope his dream is realized and thousands more can be touched as I.


The latest message from Patrick:

Hello friends,I have recently been the subject of some wonderful press and wanted to share it with all my supporters. Jason Tomassini from our local paper, the Gazette, did a fabulous piece which ended up on the front page. Thank you to Jason for doing such a wonderful job! The article may be viewed online here .

Shortly after the Gazette article was published, we were contacted by CBS News and got a spot on the local broadcast. Take a look at the segment here .

And finally, after much hard work, the trailer is online for all to see. Sundance may finally be on the horizon...

Thank you all for your continued support!

Love,
Patrick

Where Is Our National Outrage?

http://www.dailyherald.com/story/?id=254410&src=110

People with a terminal disease resort to self-reporting their results on a spreadsheet. Why is that?

We have thrown billions and billions of dollars in the last few weeks at problems that affect our bank accounts and retirement plans and mortgages and cures for financial institutions and their executives.

For a disease that kills everyman, we have spreadsheets and volunteer efforts. It's not because those grass-roots volunteers think they're smarter than the medical establishment. It's because the establishment is slow and unresponsive. We should be ashamed.

IPLEX

While on my daily watch for something positive to shout about I came across this caregivers plea. This is Tatiana’s story so read on… I support this petition so people who want and need this drug can have access. I supported her, I hope you will to…

Six months ago my husband was diagnosed with ALS (Lou Gehrig’s disease). There is no known cure or treatment. Once diagnosed, the patient is essentially handed a death sentence. I would do anything to help him. I need a huge favor and your help in order to get another chance for my husband and thousands of other people with ALS another chance and hope. We cannot wait, every week every day counts. In 2006, the FDA approved a drug called IPLEX manufactured by Insmed. There followed a number of anecdotal claims stating that IPLEX was effective in slowing down progression and possibly reversing some of the effects of ALS, as well as HIV and burn victims..Unfortunately, Genentech took Insmed to court, for patent infringement. The case was settled in March 2007 causing IPLEX to be pulled off the market world-wide. Only a small study now exists in Italy because of the involvement of Italian Ministry of Health. These results are due in the Fall or early winter, and many positive results have been reported in the Italian media. The court system in Italy officially recognizes these positive results. From a statement on Insmed’s website http://www.insmed.com/iplex.php: “As part of this settlement, we are allowed to develop IPLEX™ for specific indications. ALS is not one of the permitted indications.” What can you do? We found this petition on the internet to “Allow IPLEX to be distributed to ALS patients and burn victims”. I’m asking you to sign this petition to help us reach our goal of 10,000 signatures to allow IPLEX to be distributed to ALS patients,The following is the link to this petition. http://www.thepetitionsite.com/1/allow-iplex-to-be-distributed-to-als-patients-and-burn-victims-big-pharma-protects-profits-instead
Thank you very much.

So if you have a moment, look at the site or head straight to the petition. We need access to every possible treatment that could save any life. It only takes a minute, but you could make a huge difference in the life of one family — and many others.

Why The Secrecy About ALS?

Here's an interesting experiment.

Go to http://www.healthjournalism.org/ to visit the site of the Association of Healthcare Journalists. That's the professional organization for all of those serious print and broadcast media journalists. Browse around. Try Resources, Tip Sheets. Use the search box to find materials about ALS... or amyotrophic... or Gehrig's... or motor neuron disease...

It's no wonder this disease doesn't get any attention. We've not left any clues or ideas for those with the power of the pen or microphone. Great Caesar's ghost!

Where is the ALS p.r. machine?

It's Your America. Here's A Change We Need!

http://www.change.gov/page/content/americanmoment


Since they asked, let's spread the word and let our next President know that we need change. We need to find the cause of ALS. That should be very do-able for a country that puts its mind and necessary resources to the problem.

That's change that will save lives and heartache and money.

Is there a more needed change? I think not.

Please submit your thoughts at the link above, and let's put America on a mission to figure ALS out. We have had 12 Presidents since Lou Gehrig died. Let the 13th know that we want to change the prognosis for ALS in his first term. Yes, we can... with his leadership and commitment.

ALS Found A Publicist

http://als-advocacy.blogspot.com/2008/11/newsweek-als-advocate-michael-goldsmith.html

Midnight Regulations, Anyone?

From ABC News

http://www.abcnews.go.com/Blotter/story?id=6146929&page=1

The "midnight regulations" are coming from the Bush administration. Do we need to be on the watch for anything that might be bad for the ALS cause? Do we need to plant some seeds for things that will help?

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The clock is ticking.

ALS Needs A Publicist

If only we had a talent as good at getting the word out about ALS as Mr. Levinson did for his clients.

From today's Washington Post --

http://www.washingtonpost.com/wp-dyn/content/article/2008/10/25/AR2008102502132.html

Author Peter J. Levinson, 74; Music, Entertainment Publicist
By Matt SchudelWashington Post Staff Writer
Sunday, October 26, 2008; C09

Peter J. Levinson, 74, a music and entertainment publicist who represented a who's who of show business stars and who had a second career as a biographer of musical figures, died Oct. 21 from a fall at his home in Malibu, Calif. In January 2007, he had amyotrophic lateral sclerosis, or Lou Gehrig's disease, diagnosed.

In 50 years as a publicist, Mr. Levinson helped guide the careers of such stars as Rosemary Clooney, Jack Lemmon, Art Garfunkel, Peggy Lee, Joel Grey and Phyllis Diller. He handled publicity for television shows and movies, including "Kramer vs. Kramer," which won the 1979 Academy Award for best picture.

He was credited with pitching an idea about the television show "Dallas" that ended up as a Time magazine cover story in 1980.

Mostly, though, Mr. Levinson toiled in the often barren field of jazz publicity at a time when the music he loved was losing popularity. His clientele read like a jazz hall of fame, including such luminaries as Count Basie, Artie Shaw, Dave Brubeck, Billy Taylor, Mel Tormé, Ramsey Lewis, George Shearing, Chick Corea, Maynard Ferguson and Wynton Marsalis.

"I've been hiring publicists since 1936," bandleader Woody Herman once said of Mr. Levinson. "This guy's better than any guy I've ever had."

Jazz writers across the country grew familiar with Mr. Levinson's deep, radio-quality voice on the telephone, as he called to announce a concert appearance or the release of a new album by one of his clients. In a recent letter, he wrote that he could no longer speak and was losing the feeling in his fingers. Nevertheless, through the use of a computer, he continued to work until his death.

In 2001, after more than 40 years as a publicist, Mr. Levinson turned to writing, publishing a biography of the troubled trumpeter and bandleader Harry James. He knew James for more than 20 years and, in an interview with the Philadelphia Daily News, recalled his first encounter with him at a nightclub in 1958:
"I saw how sad he was the first day I met him. Seeing him with a bar girl sitting in his lap, I felt sorry for him. I saw the other side of stardom. He had everything, but he had nothing."
Critic Nat Hentoff called Mr. Levinson's book about James, "Trumpet Blues," "one of the very few biographies of a musician I have read that not only told me much more than I thought I knew but compelled me to listen right away to the music again."

Mr. Levinson also published biographies of music arranger Nelson Riddle and bandleader Tommy Dorsey. In his 2005 Dorsey biography, he described how Dorsey gave Frank Sinatra his first big break and how Sinatra modeled his demeanor after Dorsey's "dynamic presence, the unquestioned authority that he exuded, his mercurial temper, and his combativeness."
He also revealed how Sinatra was able to break a lifetime contract with Dorsey, by which Dorsey was to receive one-third of Sinatra's future earnings: Underworld thugs supposedly shoved a gun in Dorsey's mouth and handed him an envelope stuffed with cash. The episode is said to have been the inspiration for the "offer he couldn't refuse" scene in "The Godfather."
Peter J. Levinson was born July 1, 1934, in Atlantic City and began writing about jazz as a student at the University of Virginia in the 1950s. After graduating, he served in the Army and moved to New York, where he found a job in the publicity department of Columbia Records. One of his Columbia projects was the landmark 1961 release of the recordings of 1930s blues master Robert Johnson.

In 1962, Mr. Levinson became the publicist for singer Jack Jones, and after a few years he opened his company, Peter Levinson Communications. He had offices in New York and Los Angeles before moving permanently to the West Coast in the 1980s.

In 1986, Mr. Levinson worked to get the U.S. Postal Service to release a postage stamp featuring Duke Ellington, the first time a jazz figure appeared on a stamp.

Shortly before his death, Mr. Levinson completed a biography of dancer Fred Astaire, which will be published early next year.

Survivors include his wife, former "60 Minutes" producer Grace Diekhaus; and a brother.

This Beats An Autograph

Many of us always had hopes that the "baseball President" would have taken an interest in Lou Gehrig's Disease, but that never happened.

Baseball has been very good to him financially, but he never seemed to click with an empathy for those with the disease that took the best of baseball's best.

He did click his pen and sign on the dotted line, today, though...

Statement by Press Secretary Dana Perino
White House News
On Wednesday, October 8, 2008, the President signed into law:
H.J.Res. 62, the "Native American Heritage Day Act of 2008," which designates Friday, November 28, 2008, as Native American Heritage Day to honor the achievements and contributions of Native Americans to the United States;
H.R. 1157, the "Breast Cancer and Environmental Research Act of 2008," which requires the Department of Health and Human Services to establish a committee to coordinate Federal research related to breast cancer;
H.R. 1343, the "Health Care Safety Net Act of 2008," which reauthorizes the Department of Health and Human Services Health Centers, National Health Service Corps, Rural Health Care, State Loan Repayment, and Primary Dental Workforce programs for fiscal years 2009 through 2012;
H.R. 3068, the "Federal Protective Service Guard Contracting Reform Act of 2008," which requires the Department of Homeland Security to issue regulations establishing guidelines for the prohibition of contract awards for certain guard services to businesses that are owned, controlled, or operated by an individual who has been convicted of a felony;
H.R. 3229, the "National Infantry Museum and Soldier Center Commemorative Coin Act," which requires the Department of the Treasury to mint and issue coins in 2012 in commemoration of the United States Army Infantry and the establishment of the National Infantry Museum and Soldier Center;
H.R. 4120, which expands Federal jurisdiction of crimes related to child sexual exploitation to include conduct using any means or facility of interstate of foreign commerce or in or affecting interstate or foreign commerce; makes it a crime to "knowingly access with intent to view" materials which contain depictions of child pornography; and adds crimes involving child pornography to the list of predicate crimes for money laundering prosecutions;
H.R. 5001, the "Old Post Office Building Redevelopment Act of 2008," which directs the General Services Administration to proceed with redevelopment of the Old Post Office Building in the District of Columbia;
H.R. 5057, the "Debbie Smith Reauthorization Act of 2008," which authorizes appropriations for each of Fiscal Years 2009-2014 in the amount of $151 million for the Debbie Smith DNA Backlog Grant Program; $30 million for the Sexual Assault Forensic Exam Grant Program; and $12.5 million for DNA training and education programs;
H.R. 5265, the "Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008," which renames certain Department of Health and Human Service muscular dystrophy (MD) research facilities as Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers and makes certain changes relating to research and coordination of activities regarding MD;
H.R. 5571, which extends through March 6, 2009, the Department of Homeland Security's authority to waive the foreign residence requirement under the visa program for certain foreign doctors who agree to practice medicine for at least 3 years in health care facilities in areas designated as having a shortage of health care professionals;
H.R. 5872, the "Boy Scouts of America Centennial Commemorative Coin Act," which requires the Department of the Treasury to mint and issue coins in 2010 in commemoration of the centennial of the founding of the Boy Scouts of America;
H.R. 6370, the "Oregon Surplus Federal Land Act of 2008," which requires the Coast Guard to transfer the Cape Arago Light Station and 24 surrounding acres of land located in Coos County, Oregon, to the Department of the Interior to be held in trust for the Confederated Tribes of the Coos, Lower Umpqua, and Siuslaw Indians;
H.R. 6460, the "Great Lakes Legacy Reauthorization Act of 2008," which reauthorizes appropriations through FY 2010 for projects to remediate contaminated sediment in the Great Lakes;
H.R. 6890, which extends through September 30, 2009, authority for the Secretary of Education to waive certain Federal financial requirements for school districts affected by Hurricanes Katrina and Rita, and provides financial relief for areas affected by storms in the Midwest or hurricanes in the Gulf of Mexico in 2008;
H.R. 6894, the "Defense Production Act Extension and Reauthorization of 2008," which extends until September 30, 2009, authorities under the Defense Production Act that address urgent industrial base shortfalls for technologies and materials that impact national defense requirements;
H.R. 6946, which makes a technical amendment to the New and Emerging Technologies 911 Improvement Act of 2008;
S. 496, "Appalachian Regional Development Act Amendments of 2008," which authorizes appropriations for the Appalachian Regional Commission through FY 2012; authorizes an economic and energy development initiative for the region; and extends the date on which the authorities of the Commission would cease to be in effect to October 1, 2012;
S. 1046, the "Senior Professional Performance Act of 2008," which provides senior-level and scientific and professional Federal employees the same opportunity for higher pay that is available to members of the Senior Executive Service and makes certain changes to the performance appraisal certification system;
S. 1382, the "ALS Registry Act," which authorizes the Department of Health and Human Services to create a data collection system and population registry for Amyotrophic Lateral Sclerosis and related neuron disorders;
S. 1810, the "Prenatally and Postnatally Disgnosed Conditions Awareness Act," which authorizes the Department of Health and Human Services to establish a grant program to collect and disseminate information regarding Down syndrome or other prenatally or postnatally diagnosed diseases and to coordinate the provision of support services for those who receive a diagnosis of one of those diseases;
S. 2482, which repeals a requirement to obtain a judicial license prior to conducting salvage operations off the coast of Florida;
S. 2606, which authorizes appropriations to the United States Fire Administration (USFA) for FYs 2009-2012 and authorizes various changes to USFA's training programs and activities;
S. 2932, the "Poison Center Support, Enhancement, and Awareness Act of 2008," which extends the authorization of appropriations for the Poison Control Center grant program, national toll-free number, and national media campaign programs related to poison control;
S. 2982, the "Reconnecting Homeless Youth Act of 2008," which reauthorizes Federal funding for grant program that provide services to runaway and homeless youth and their families; and modifies program requirements relating to eligibility, performance standards, and other matters;
S. 3560, the "QI Program Supplemental Funding Act," which makes changes to certain Medicaid and Medicare programs, including new program integrity provisions; and provides market exclusivity for certain antibiotics; and
S. 3597, which provides that funds allocated for the Community Food Projects program in FY 2008 will remain available in FY 2009.