What Would It Take?

...to have the U.N. declare a World ALS Awareness Day?

The folks enraged about autism certainly got the job done. Can we learn from them?

http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=109&STORY=/www/story/03-11-2008/0004771801&EDATE=

http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/

http://www.autismspeaks.org/

We need for some marketing-savvy people who have lost loved ones to ALS to be as enraged as these parents and to expand our view of advocacy. We need to get the word out about ALS. We need to use the rage to then engage every world organization involved in health concerns to take ownership of a part of this global problem we call ALS or Lou Gehrig's Disease or motor neuron disease or motor neurone disease or Maladie de Charcot or ...

p.s. Notice they they even have General Motors involved with cause-based marketing... see the Chevrolet link at autismspeaks.org.

Orphaned Disease seeks Caring Corporation

CVS pharmacy has Caremark that provides financial gifts to cover pharmaceutical needs of "Miracle Workers" patients. "Miracle Workers" are a team of doctors who perform breakthrough procedures to heal those most in need. Procedures range from restoring vision to the blind to performing deep brain stimulation to dramatically reduce the motor symptoms associated with Parkinson's disease. ABC will provide a web site where viewers will be able to follow the patients beyond each episode to see first-hand how the procedures continue to transform their lives.
Chilis has Little Smiles a charitable organization that strives to fulfill the needs for children in local hospitals, hospices and shelters with toys, games, videos, computers, outings, special events, limousine transportation, concert and sporting event tickets, specialty dinners and celebrity meet and greets and more. Little Smiles is launching a year-round multi-dimensional effort to enhance the lives of ailing and life altering illnesses children in South Florida and now in Philadelphia, PA as well. Little Smiles currently assists children’s hospitals, hospices, and shelters in the South Florida area including Lee, Dade, Broward, Palm Beach, Martin, and St. Lucie Counties. The long-term plan includes being able to assist every county throughout Florida, Pennsylvania, and eventually on a complete national level.

I know of an orphaned disease in need of a little corporate companionship. This disease is ALS, known as Lou Gehrig's disease. Besides being labed orphaned this life treating illness has tragic dark sides long before it runs it's deadly course.

Three distinct situations leave patients with nowhere to turn and solutions of little hope.

Situation one involves single ALS patients that lose their jobs first and cannot react fast enough to make ends meet. They become trapped as the disease spirals out of control. Most are forced on family because there are no current alternatives.

Situation two belongs sadly to the ALS single parent. This case mirrors that of the single patient but is compounded by a small child. Planning in every direction ultimately leads to finding a new home for the child. Legal issues come into play as adoption decisions add to the chaos. If this disease is not cruel enough, giving a child away has to be living hell.

Situation three is divorce after an ALS diagnoses is made. It is a fact that marriages are being ripped apart by ALS. In this case ALS towers over love and a spouse is not able to handle the harsh realities this disease demands. Again, legal issue arise coupled with immediate care become high priorities. If I had accurate data you would see this is a trend just too hard to discuss.

Three tragic situations that need no more explanation and each cry out only to be noticed. We are not talking about a ton of aid with long term obligations but one last chance to live with grace and dignity.

I know this because I am a person coping with ALS.

Massachusetts has it right-Senator Coburn has it wrong.

I found this article in the Boston paper today. It sounds like we need to support Cong. Frank's efforts. Too bad he isn't in the Senate and could counter the negative thrust of Senator Coburn who has the ALS Registry legislation on hold in spite of 73 of his colleagues from both parties co-sponsoring the legislation.

HEALTH TRACKING PROPOSAL - Suzanne Dube, chairwoman of the Middleborough Citizens Environmental Health Impact Committee, hopes federal legislators will support a bill cosponsored by US Representative Barney Frank to create a nationwide health network, that will expand on federal and state public health surveillance data collection. Such a network would allow for better tracking of chronic diseases such as Amyotrophic Lateral Sclerosis, also called ALS and Lou Gehrig's Disease. That disease is of interest to Middleborough residents because the rate of incidence of ALS in Middleborough is 72 percent higher than it is nationwide. State health officials have been looking at possible links to two hazardous waste sites in town. In January, Massachusetts became the first state in the country to establish an ALS registry. - Christine Legere

Des Moines Register Hits Another Home Run

Marc Hansen hit a home run with his article in this morning's Des Moines Register (a paper we can count on to "get it" when it comes to ALS thanks to Rob Borsellino).

"Hansen: How Will U.S. Take Care Of Iraq, Afghanistan Vets?"

Article

Perhaps on Advocacy Day we should have sweatshirts to give Senators that say on the front, "I understand that every veteran of U.S. Military service is for some unknown reason at significantly increased risk to get ALS." How about a group picture on the steps of the Capitol wearing your new sweatshirts, Senators?

PROJECT FIVER

Melissa "Fiver" Kern has been a fan of J.R.R. Tolkien since she read The Hobbit as a child, and has always loved books. Her heart leaped when she saw the preview for Peter Jackson’s film adaptations of Lord of the Rings, and she has been involved in organizing like-minded "Ringers" in the Southeast for many years now.

The hard fact is that Melissa has just been diagnosed with ALS, commonly known as Lou Gehrig’s Disease. Essentially, it causes all the motor neurons in the brain to shut down, gradually making the muscles unable to function. Life expectancy is 3-5 years from diagnosis. (She’s had the disease for about a year already.) The disease progressively takes away movement and coordination. In September, she marched with fellow LotR fans in the annual DragonCon parade. Six months later, she is barely walking, and needs my help to climb stairs or get dressed.

She is excited about the filming of "The Hobbit" sequels, but was apprehensive about the release dates of 2010 and 2011: She doesn’t even know if she’ll still be alive when these movies are released. I told her to make that her goal : to be around to see these films in the theater. But we don’t know how this disease will go.

The goal of PROJECT FIVER is to deliver a petition to Peter Jackson, New Line Cinema / Wingnut Films, and whomever takes the Directorship, asking that Melissa "Fiver" Kern be cast as a costumed hobbit extra.

Cast your vote and signature at http://www.projectfiver.com/. Make a dream come true and send Melissa to the big screen. As of 3/19 nearly 2600 signatures.

The Motley Fool Writes A Priceless Headline!

ALS: The Disease That Kills Drugs
http://www.fool.com/investing/high-growth/2008/03/14/als-the-disease-that-kills-drugs.aspx
Brian Orelli

March 14, 2008
Sometimes drugs work, and sometimes they don't. That's just the nature of drug development. For drugs treating amyotrophic lateral sclerosis (ALS), still known as Lou Gehrig's disease, it seems that the latter category is more often the case.


The latest drug to fail against the fatal disease was Teva Pharmaceuticals' (Nasdaq: TEVA) Copaxone. Yesterday's announcement was light on the details, stating only that Copaxone failed to slow the progression of the disease or help ALS patients live longer. Investors probably don't need to know any more information than that, although I'm sure the data will be presented at a medical conference or in a journal later in the year.


It would have been ironic if a drug whose mechanism of action isn't fully understood had worked on a disease whose cause is equally mysterious. Teva's move to test the drug on ALS patients wasn't a complete stab in the dark; there's some evidence that the immune system plays a role in the development of ALS, and Copaxone mitigates the body's immune response.
Fortunately for Teva, this was only a small phase 2 trial, so it didn't have to shell out a lot of money to discover the drug's ineffectiveness for ALS patients. And it's still selling Copaxone for multiple sclerosis, which saw 21% year-over-year increase in sales last year even in the face of tough competition from Elan's (NYSE: ELN) and Biogen Idec's (Nasdaq: BIIB) Tysabri.
Unfortunately for ALS patients, there are few options for treating the disease. Sanofi-Aventis' (NYSE: SNY) Rilutek extends survival slightly, but the market is pretty wide open for a new drug to be developed. Teva has another compound, Talampanel, in phase 2 testing on ALS patients. CytRx's (Nasdaq: CYTR) arimoclomol is also in phase 2b testing, although the FDA currently has it on a clinical hold because of pre-clinical safety data.
The key to investing in biotech companies is to understand the risks involved and adjust your valuations accordingly. Given the track record of drugs attempting approval for treating ALS patients, I wouldn't give a positive value to any ALS drug in a pipeline until it had at least passed phase 2 trials. Even then, investors should proceed with caution until phase 3 results are announced.

ALS Is A Taxing Disease

IRS Amends Rebate Notices
Associated Press March 11, 2008;


WASHINGTON -- The Internal Revenue Service said it will contact about 20.5 million people who receive Social Security or Veterans Affairs benefits to ensure they don't miss out on the economic-stimulus payment of at least $300.

The IRS previously announced it was sending 130 million letters to households that filed returns for the 2006 tax season to remind them that they must file a return to receive the stimulus payment.

This mailing drew criticism from Sen. Charles Schumer (D., N.Y.), who said the agency was spending nearly $42 million to contact people who normally file returns and would get their payments automatically.

_____

Senator Schumer just saved us more than enough for an ALS registry and a whole lot of ALS research!

Dissent, Kindergarten or War

Parents Law Suit Claims Autism Was Caused By Shots

Is this how research, epidemics and disease get a break, from a judge? For years we have been vaccinating children with a vaccine perservative called Thimerosal, and how it was linked to autism which is now an epidemic. Several years ago a study was done and stated that Thimerosal was not the cause. However, there are many that believe that the study is not accurate and that something caused the autism in otherwise perfectly normal children.

Since 1999, over 4800 families filed claims with the government blaming the routine vaccinations for their child's autism. The vaccinations were for measles, mumps and rubella. Other vaccines also contained Thimerosal which is 50% mercury by weight. ABC News states that this court, set up specifically for vaccine cases, is easier to prove liability than a regular court of law. In this court, the parents are only required to provide evidence that Thimerosal is "more likely than not" to cause autism.

The CDC is beginning another study of children ages 2 to 5 with autism and other undefined developmental problems. The last CDC study showed that autism decreased when Thimerosal was removed from vaccinations. Other studies state that the rate of autism has not declined.

Turning to the Gulf War and the increase ocurrences of ALS, Lou Gehrig's disease. Have these new facts come down to one modern day decision, vaccination or court-marshall?
A Call To Arms tells the story of members of the military who were ordered against their will to receive the controversial anthrax vaccine. Years later, after all the disturbing facts about the vaccine have surfaced, the US military still intends to vaccinate all our troops.

Raven Warrior is based on the actual court transcripts of Corporal Jared Schwartz, the first U.S. serviceman to be court-marshalled for his refusal to take the controversial anthrax vaccine.
http://www.acalltoarmsmovie.com/home/about

Raise The Noise Level and New Leadership

Various message boards are picking up some buzz from people with plans to attend the national ALS Advocacy Day on Capitol Hill in May.

Unfortunately for many reasons, the extraordinary assembly of PALS and CALS gets no media buzz.

Here's an idea for those making the trek. Many of the PALS who make the difficult trip have ties to schools. Mrs. Doe may have been a teacher and Mr. Doakes may have been a soccer coach. Those schools probably have some budding student journalists, and many high school journalists are quite talented in a multitude of media. How about having some high school journalists and their advisors cover Advocacy Day? There are a lot of stories there, and they would get a valuable civics lesson and experience in handling real political reporting.

Now you're probably asking who is going to pay for this. If you live in a city with a professional sports franchise, you are living in a city with some very large charitable foundations. We pay our teams and athletes so much that they establish foundations for tax reasons. The vast majority of those foundations aren't looking for a disease to cure, but they often are willing to support youth initiatives. Here's a youth initiative that will perform a valuable service to PALS and CALS and will also cultivate some of tomorrow's leaders in journalism and in dealing with ALS. It's also a youth initiative that will boost the determination of today's students who are losing parents to ALS. $3500 to send a student and a faculty advisor to Advocacy Day will be an extremely modest grant for athletes and sports franchises known to drop many times that in profanity fines each month.

It would be wonderful to see some print, photojournalism, and e-media journalism revolving around that day on Capitol Hill. It would help to spread the word.

If You Want Fun, Go To DisneyWorld

"This is not fun volunteer work. This is frustrating and emotionally painful volunteer work." Bruce Hetrick describing his award-winning work for the American Cancer Society in the battle against cancer caused by second-hand smoke which killed his wife.

These poignant words apply to the battle against ALS, too. Oh, how they apply!

Orlando to Washington in a wheelchair

I don’t know about you, but planning a tour from Orlando, Florida, to Washington, DC, in an electric wheelchair boggles my mind. But I kid you not a friend of mine, who also has ALS or Lou Gehrig’s disease, is going to do it. He isn’t doing it to raise funds or for his own benefit, he is doing it to raise awareness for this mysterious but incurable neuromuscular disease. If he does raise money over an above his expenses it won’t go to waste. He will give it to organizations conducting research for improved therapies or a cure.

Ken Patterson is leaving on April 19^th from Orlando after the annual Orlando Walk to Defeat ALS event headed nearly 1,000 miles up the smaller roads and highways, through two major Army reservations. Ken is a veteran and he wants to make sure the public and his Army buddies know that those serving in the military have twice the incidence of ALS as the general public. That is pretty frightening because no one knows why this is true and Department of Defense research funds to study this are in jeopardy. Almost as frightening is that over 360,000 Americans have died since Lou Gehrig died nearly 70 years ago.

I met Ken and his wife and caregiver, Glenda, recently at an ALS event. I had known him via the internet and was always impressed with his vigor and dedication. In fact it was Ken who provided me with a list of key tips for emergency medical service people who come across ALS patients. It turns out that many health care workers are as ignorant about the disease as I was before I was diagnosed. That is a pretty scary scenario.

I was a little surprised to discover that he, like me, must depend entirely on an electric wheelchair to get around. But Ken also lost most of his speech and has only little movement left in his hands. He and Glenda came to the event with a bound notebook of issues he wanted the assembled ALS researchers to address. I mean this is one prepared son of a gun!

Now he is well on his way to making this long and arduous tour with his bicycle riding buddy, Jerry House, followed by Glenda in a support vehicle. This is one brave guy and one I am happy is on my side in trying to raise awareness about ALS.

His tour will end in Washington, DC, after a tour through Arlington National Cemetery. In Washington he will join hundreds of other patients with ALS, their caregivers and workers from all over the US for the annual ALS Association Public Policy Conference and Advocacy Day.

I am just hitting a few highlights about Ken’s Rolling Over ALS Tour. It is a treat to read about the details including the travel route and schedule on his website, www.rolloverals.org. Also you can make a donation and purchase a customized magnet ribbon which he hopes will cover his support vehicle.

It seems appropriate to mention that Ken is one good natured fellow and not grumpy like some.

From ALSA - Please spread the word...

From the ALSA Advocacy Department --


Urge Congress to Join Our Fight for a Treatment

Take Action!
Continue Funding for the Peer Reviewed ALS Research Program at the Department of Defense

We need your help today to continue critical ALS research taking place at the Department of Defense. Please ask your Senators and U.S. Representatives to request that the Appropriations Committee provide $5 million in funding for the ALS Research Program at the Department of Defense (DOD).
BackgroundThanks to the efforts of The ALS Association and advocates across the country, last year, the Department of Defense provided $5 million to establish the peer reviewed ALS Research Program (ALSRP). The program is the only ALS specific research program supported by the DOD. And unlike many other federal research efforts, which focus on basic science, the ALSRP is promoting translational research with the specific goal of finding new treatments for the disease. In fact, the ALSRP is modeled after The ALS Association's TREAT ALS initiative (Translational Research Advancing Therapy for ALS).
Since this year's budget process began in February, The ALS Association has continued to reach out and meet with Members of the House and Senate Appropriations Committee to request support for the ALSRP in FY 2009. However, your grassroots outreach is now needed as the Appropriations process moves forward.
Contact Congress TODAY!Please contact Congress TODAY! It is essential that your Senators and U.S. Representative know how important this program is to our military men and women and to the entire ALS community in your state. A letter you can send is available in the Advocacy Action Center of our website. The letter also includes a sample letter your Members of Congress can send to the Appropriations Committee in support of the ALSRP. The deadline for sending this letter is Friday, March 15. So please contact Congress today.
Make ALS a PriorityIt is absolutely critical that you contact Congress TODAY. Over the coming weeks, Congress will make key decisions on which programs to fund next year and they will be bombarded with many funding requests which are competing for limited dollars. In fact, several other organizations have followed our lead and, this year, are requesting funding to start their own programs at the DOD. Therefore, we need to make sure our message is heard loud and clear. We need to make sure that funding for ALS research is a priority!
Please contact Congress TODAY!
Thank you for your continued advocacy. Together, we are making a difference!
If you have any questions or would like additional information, please contact The ALS Association Advocacy Department at advocacy@alsa-national.org or toll free at 1-877-444-ALSA.

Who Are The Shareholders?

This morning (March 7, 2008) there was a column in the Wall Street Journal that had these remarkably simple and clear tips for corporations.

What's good for the corporation is probably good for the ALS not-for-profit organization, too.

Learning From Google and Yahoo

Following are search strings that people used in February to find a website that contains some ALS data. It's interesting to see what people are looking for. It says a lot about the nature of this beast of a disease. I can visualize some of the people typing in those search strings the day they've returned home from doctors' visits.

als lithium
als advocates
als awareness month
als maladie de charcot
als statistics countries
als worldwide prevalence
alscounts
catfish hunter amyotrophic lateral sclerosis
cure
als sticker
explaining als easily
how can life be so creul for someone who has als
how many people have died from als
how to know if als is progressing
jar to als
lou gehrig's disease
morrie schwartz
mothers with als
odds of getting als
people have died from als number of
photos of jennifer estes
als story

A Special Request to ALSA, MDA, ALSTDI, Packard Center

If Grumpy's thoughts about "What Would Lou Gehrig Do?" are far too much of an organizational stretch for you all, here's an idea that is a very small step that would save you all some expense and would give PALS better information.

This morning I was searching online clinical trial information to see where I could find data on completed trials' results. In the course of my little Google adventure, I found that you all have developed your own clinical trial databases to display information on your websites. When I put the information side-by-side, some are more complete or more current than others, but all appear to be attempting to provide the exact same service to PALS.

There are tools available that would let one repository show on each of your websites as if it were your own (see products such as Caspio Bridge if you're interested). You can keep your branding and still share a database with other websites.

There is also a site available from our own government that has a nice clinical trial search engine and gives data on enrollment, content, and even shows some results (which was the information I was after in the first place).

So if you want to save some expense and if you are willing to collaborate on something simple in order to provide better data for PALS, how about doing a shared database of clinical trial information... or even better, just agree to direct people to the government site that maintains data for all trials and will even let people search by sponsor?

The first of you to see an opportunity here and step forward will be applauded by PALS everywhere. In the meantime, above is the trail of expensive, redundant web development and maintenance that your donors are funding. I rest my case.