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.

Friday, May 29, 2009

Let's Take A Bite Out Of The Crime of ALS

ALS is mentioned in USA Weekend. 

Sometimes, in both humans and dogs, diseases that don't seem to be associated may be. First discovered in 1973, degenerative myelopathy is a spontaneously occurring disease in dogs affecting the spinal cord, and later the nerves and muscles, ultimately leading to paralysis. For years, the cause of this disease has been a mystery.

Veterinary neurologist Joan Coates, associate professor at the University of Missouri College of Veterinary Medicine, studied the disease, particularly in Pembroke Welsh corgis. A breakthrough arrived when she and colleagues, including Kerstin Linblad-Toh and Claire Wade, molecular genetic researchers at the Broad Institute at MIT and Harvard, discovered a gene called SOD1 in dogs with degenerative myelopathy. It turns out that same mutated gene is similar to the underlying cause of some forms of amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. In dogs, genetic risk factors now can be tested, which will help breeders decrease the presence of the genetic mutation within the breed.

Now that the gene mutation is identified," Coates says, "our long-term goal is to work with human ALS researchers and their molecular therapeutic approaches, which, if safe and work for dogs, may also help people with ALS. All in all, working on both the canine and the human sides simultaneously speeds research to learn more about both of these devastating diseases."

It's always good when ALS makes the national press in a context that average readers will relate to.  As an added bonus, perhaps some of the rage and activism of the animal rights movement might even spill over and add some energy to the anti-ALS movement.

Here's Hoping Lou Dobbs Was Named After Lou Gehrig

Following was on the forum and was attributed to the ALS Association.  Unfortunately I don't seem to get ALSA alerts any longer. Thanks to those who post them on boards.


CNN Special Investigations Unit to Air Report on Alternative Stem Cell Treatments for ALS and other Diseases

CNN’s Special Investigations Unit is expected to air a story about patients who seek alternative treatments for disease and the physicians who offer these treatments in the United States and internationally.

Lucie Bruijn, Ph.D., senior vice president of research and development of The ALS Association, was interviewed for this story and provides commentary on stem cell  therapies that patients undergo for Lou Gehrig’s Disease.  It is not expected that a person with ALS will appear on this report. This report may be followed by a longer report on CNN at a future date.

The Special Investigations Report is expected to air Monday, June 1 on “Lou Dobbs Tonight” at 7 p.m. Eastern Daylight Time.  This air date is subject to change without notice.  Check local listings for air time for this program in your area.  The CNN Special Investigations Unit website is located at

Thursday, May 21, 2009

We Need To Shake Down Some Thunder!

Q. What do you think of the book “Fighting to Give?”

A. Honestly, I think it should be an Oprah’s choice and reach No.1 on the Best Seller list. As my longtime friends have said, you can’t make this stuff up!

Show Some Kids A Corny Movie

...and help the awareness of Lou Gehrig live on.

Here's a nice article on a lot of good baseball movies for the kids to watch this summer.

Toted as "the private life of a public hero," the 1942 biopic The Pride of the Yankees is the emotional story of basbeall hero Lou Gehrig (Gary Cooper) and how his career was cut short by ALS. Gehrig's career is followed from his childhood to his final speech in Yankee Stadium. Because Gehrig was left-handed and Cooper was right-handed, the game sequences were filmed in reverse and then flipped.

If ever there were a perfect summer to show some kids "The Pride of the Yankees," this is it.

WSJ Has Article On New NIH Drug Development Program

The Wall Street Journal
MAY 21, 2009, 10:25 A.M. ET
NIH Launches Drug-Development Program for Rare Diseases

WASHINGTON -- The National Institutes of Health is wading into the drug-development process by launching a program aimed at finding and getting new drugs ready for testing in humans with rare diseases. The development program would also target so-called neglected diseases, while rare in the U.S., are often linked to parasites that sicken millions of people who live in tropical parts of the world. ”We’ve never tried to directly develop medicines for rare and neglected diseases,” said NIH Acting Director Raynard Kington, who announced the program Wednesday. NIH has traditionally engaged in basic science and has only had limited programs for developing drugs. The program comes with new money from Congress and is aimed at finding new treatments for some of the 6,800 rare diseases that collectively affect about 25 million Americans. Of those diseases only 200 have treatments, according to NIH.

The project, known as Therapeutics for Rare and Neglected Diseases Program, will be overseen by the NIH Office of Rare Diseases Research. Stephen Groft, the director of the rare diseases office, said the program is starting with $24 million in funding this year with expectation of receiving the same amount each year until 2013, which effectively means the program would only be able to focus on a couple of compounds per year. ”Preclinical work is hard and our resources will be limited,” he said. However, he said other funds from NIH centers and existing programs can be used to augment the broader drug-development program. Groft said NIH would work with researchers and patient advocacy groups to identify possible molecules that could be developed into a potential treatment. The goal of the program is to turn over potential new medicines to private companies for further development. Information about chemicals that failed in tests will be published.

I hope that ALSA, ALSTDI, MDA, Packard Center, Les Turner, etc. will speak to us on this and whether it can help ALS drug development.

Are You Aware That May Is ALS Awareness Month?

Readers in Sacramento are now.

The only thing worse than sporadic ALS is familial ALS.   We still have ten days in May to create a depth of awareness that will motivate some public resolve to figure this stinking disease out.

Keep Writing, PALS

Another book from one with ALS...

Tuesday, May 19, 2009

Can Common Sense Rules For Caregiving Prevail?

From the Galesburg Register-Mail

Posted May 19, 2009 @ 07:09 PM
When Kathi Kupferschmid found out Tuesday that lawmakers had just voted to send the governor a plan to let people get paid for providing full-time care to their disabled spouses, one word leaped to mind. "Hallelujah," said Kupferschmid, who provides constant care to her husband, Dennis, at their East Peoria home. He has amyotrophic lateral sclerosis, or Lou Gehrig's disease, and it prevents him from moving anything except his eyelids. For the past six years, he has needed a ventilator to breathe. The Kupferschmids and another Peoria-area couple, Stefanie and Bryan Eklund of Knoxville, inspired state Sen. David Koehler and Rep. Donald Moffitt to push the legislation that now is on its way to Gov. Pat Quinn. The couples face similar situations. The wives care full-time for their seriously disabled husbands but are ineligible for the Medicaid payments that would be given to an outside caregiver. Koehler, D-Peoria, and Moffitt, R-Gilson, thought that wasn't fair. They introduced legislation last year to allow "spousal caregivers" to receive Medicaid payments, but the measure never reached the governor's desk. This year, though, lawmakers overwhelmingly backed a slimmed-down proposal to create a pilot program allowing spousal caregiver payments to a maximum of 100 families. The Illinois Department of Public Health's home services program would oversee the project. If deemed successful, it eventually could be expanded. The Illinois Senate on Tuesday approved the legislation, House Bill 39. It already passed in the House of Representatives and needs only Quinn's signature to become law. To counter concerns about "opening the floodgates," the bill was written to include safeguards to make sure that participants in the pilot program are qualified and that the state is protected from fraud, Koehler said. "It's clearly the right thing to do," Moffitt said. "It's going to help people." Kupferschmid said there's no doubt about that. Under the existing rules, she said, she and other spouses get penalized because they choose not to bring in outside caregivers. "No one will provide the care that I provide to my husband," she said. "Nobody has the interest that I do." But that means she can't work an outside job, and the family must keep a tight grip on finances. Unexpected expenses pose "a huge burden," she said. The spousal caregiver measure, if it becomes law, "is going to give me some peace of mind," Kupferschmid said.

It's Too Bad All The News Cameras and Talking Heads In South Bend Didn't Cover This Event

It's particularly ironic when one who heals gets ALS.

Monday, May 18, 2009

Lou Who?

Ask a Little Leaguer or a high school first baseman about Lou Gehrig, and you may get a, "Lou Who?" response. It has been a long time since Lou starred for the Yankees.

We must not let his memory fade away. He is the only reason that ALS has a name and a fate that people remember.

ALSTDI has a program to keep Lou's memory alive through July 4 events. The concept is so simple that it just may work!

Please fire up the grill and ice down some cold ones (in memory of Babe) and have a 4 ALS barbeque that will keep the memory of Lou Gehrig alive. Please click the link and plan a July 4 that will be fun and will do some good, too.

CAMBRIDGE, Mass., May 18 /PRNewswire-USNewswire/ -- The ALS Therapy Development Institute (ALS TDI) announced its BBQ For ALS Awareness, is a national initiative designed to increase the awareness and understanding of ALS
(amyotrophic lateral sclerosis), otherwise known as Lou Gehrig's disease. To accomplish its goal, the campaign brings together three undoubtedly American activities on July 4th, 2009 -- an Independence Day celebration, the traditional summer barbecue (BBQ), and America's pastime -- baseball.

...and thanks once again to Michael Goldsmith.

Sunday, May 17, 2009

Nothing Is Ever Easy For Those Dealing With ALS

Below is a story about a family spending time and money and effort trying to advance the fight against ALS in Washington last week, and they didn't exactly encounter the friendly skies.

Following is from their complaint registered with USAirways. It is a good example of how we need to educate the public on the basics of ALS and respect. This kind of travel challenge reflects the rampant lack of public understanding of ALS and the constant difficulties that it presents to patients and caregivers. It also speaks to our social fabric and that our respect-for-life talk is sometimes better than our respect-for-life delivery.
Sent: Thursday, May 14, 2009 2:34 PM
To: Customer Relations
Subject: Complaint, Travel completed, Disability assistance
Importance: High
Salutation: Mrs.
First name: Glenda
Last name: Patterson
Category: Complaint
Travel time frame: Travel completed
Nature of feedback: Disability assistance
Origin city: WashingtonDC
Destination city: Orlando FL
Flight number: 1189
Travel date: 05/13/09

Comments: Upon boarding the pilot INSISTED that the battery be disconnected from Ken's power wheelchair for transport even though it is a gel battery and is not required. In fact even the mechanic told the pilot it was safer to leave the battery connected because it was very well insulated. He said no and they escorted me to the chair so I could instruct them in the operation of the chair and disconnecting the battery. Upon arrival in Orlando, I exited the plane first to help get the chair ready for my husband. While I was doing that, I could see in the window of the plane there were people gathered around our seats and told Phil (last name unknown) they COULD NOT move him without me there.He assured me they would not do such a thing.
Ken has ALS (Lou Gehrig's Disease) and has little to no use of his voluntary muscles, therefore he can not speak clearly to make his needs known. I left our 16 year old daughter with him as she is the only other person with the ability to understand him. There is absolutely nothing wrong with my husbands brain and is very likely more intelligent than those that were gathered around him. Phil sent someone up to tell them NOT to move him. The pilot then instructed them to "get this man off of HIS plane".
My husband has a feeding tube as well as a diaphragm pacer and due to the decreased muscle in his diaphragm has issues breathing...none of the airline personnel knew this because they could not understand Ken, even though he and Tabitha tried to tell them not to move him.We were having trouble getting his wheelchair operational when someone on the radio said he was being moved up to the gate. I RAN to where they were wheeling him and hear him crying hysterically and see Tabitha crying because no one would stop so she could understand what he was saying. He had to sit in the aisle wheelchair, in pain for better than 30 minutes while we were getting his chair operational. I could not help work on the chair and tend to my panicing husband who was sliding out of the chair because once again he has little or no use of his muscles.
Ken is a brilliant man, who has not only served his country but also his community as a firefighter and was treated like a incompetent obstical in your pilots quest to clear his plane so he could go home. We have never received such treatment not to mention the physical danger they placed my husband in.
We travel frequently as we know our time together is limited due to Ken's diagnosis and feel it is important to make those lasting memories with our children...this is a memory I wish we could erase. I look forward to hearing how this situation is taken care of.
The thought of other physically challenged people receiving this treatment from your pilot's is sickening.
Message generated on at 5/14/2009 2:34:05 PM.

Prize4Life Speaks Up On The WSJ Article On Crowdsourcing

It's nice to see their thoughtful engagement in an important conversation. Here's hoping that the Wall Street Journal will continue that conversation.

FightingMom Gets Iplex For Her Son and ALS on the Front Page Of The Sunday New York Times

The feature is titled well, "Fighting For A Last Chance At Life."

Thanks, FightingMom.

Did Curt Schilling Put A "Strike Out ALS" Sticker On John Kerry?

Let's hope so.

Here's hoping that somebody remembered to give Curt some stickers for his day on The Hill!

We're glad that he's still pitching for us.

Also, Senator Kerry certainly understands ALS. One of his first big political breaks arose because of a District Attorney's ALS.

You Don't Want To Be An Embedded Reporter When ALS Invades

...but this one certainly gives us a valuable glimpse into ALS...

Why does this disease not scare and outrage us all enough to put forth the national resolve to get to the bottom of it?

Saturday, May 16, 2009

Can Buddy Lazier Bump Augie's Way Into The Indy 500?

This month, the Hemelgarn Johnson Motorsports entry is sporting the Augie's Quest logo on the car. Augie's quest came about through a relationship between team co-owner Ron Hemelgarn and Augie Nieto.

"Four years ago I made a commitment to Augie to help him raise funds to find a cure for ALS," said Hemelgarn. "So over the past four years we have been fortunate to raise over eighteen million dollars which has gone towards research for ALS. They have made some very good headway and still haven't found a cure but have identified the genes."

May is ALS month and the Hemelgarn Johnson Motorsports team hopes a little awareness to the race fans might help the researchers find a cure.

Buddy Lazier wasn't able to get the number 91 car into the field today, but tomorrow is bump day.  All he has to do (easy for me to say) is make that car one of the 33 fastest qualifiers and Augie's Quest will make it to the Indy 500.  This is a great opportunity for worldwide visibility.

Thursday, May 14, 2009

The Road To A Cure Is Paved With Email

The following call to action was pasted from from an ALS Association Washington, DC office communication received today:

Thank you to everyone who contacted their Senators during our virtual Advocacy Day. Your outreach has led many Senators to support the Casey-Snowe Dear Colleague letter calling for $10 million in funding for the ALS Research Program (ALSRP) at the Department of Defense. But more can be done!

Senators Casey and Snowe have extended the deadline for signing on to the letter until Friday, May 15. Therefore, we urge everyone to continue to contact their Senators and ask them to sign-on to this critical letter, which can make the difference in continuing funding for the ALSRP next year.

Even if you already have contacted your Senators, please do so again. For those who joined us in Washington this week and met personally with your Senators and staff, we encourage you to also send an email to them today. Use the Advocacy Action Center to reinforce the messages you delivered in your meetings. Tell your
Senators to sign the Casey-Snowe Dear Colleague and support our heroes who have served in the military and everyone whose life has been impacted by

Go to the
Advocacy Action Center to send your letter TODAY. The deadline for Senators to sign-on is now Friday, May 15.

To see a copy of the Casey-Snowe Dear Colleague, please click
here. Thank you for helping to create the roadmap that will lead to a treatment and cure!

Curt and Shonda Schilling Go To Washington

From Politico --

Here’s the Pitch

World Series pitcher for the Boston Red Sox Curt Schilling threw some tobacco in his mouth, discreetly had a spit cup and was ready to talk melanoma with Sens. John McCain and Sam Brownback and Reps. Peter King and Charlie Dent at a reception Tuesday.

Schilling’s wife, Shonda, is a melanoma survivor and has been coming to CapHill for years to talk about cancer and amyotrophic lateral sclerosis, but this year was the first with her husband, and she said she loved it because “no one cared about me.” The two created the Melanoma Shade Foundation, which has partnered with the Environmental Protection Agency to promote “Sunwise,” which educates school kids about the sun. (They started an ALS charity — Curt’s Pitch for ALS — in 1993.)

Here’s how it went down with McCain, who walked in, grabbed King and talked shop with Schilling. McCain: “You know King? All he’s good for is the Irish Republican Army.” Schilling: “Yeah, but he’s a good guy. He’s a Mets fan. He resisted the Yankees.” King: “I didn’t sell out to the Yankees like Giuliani did!” Schilling: “Yeah, but he had to do that.” First of all, King, isn’t it sacrilege for you to be here, being a New Yorker? “The Red Sox are a force of evil,” King said. “They really are.” Then we asked Schilling a few questions. Which congressman would you least like to pitch to? “Bunning.” (Jim Bunning was a pitcher, but whatever.) What pitch would you throw Rep. John Boehner? He laughed. “I’d ask for more funding for ALS research.” When you were with the Orioles, did you ever come to D.C.? “Twice.” Why? “To see a girl.” What do you think Congress should do about steroids? “What more can they do? It was of unscrupulous people making horrible choices. It wasn’t Congress’ fault.” Which congressman is most likely to be on steroids? “No chance! Good try though.” No one — not one — of those press-friendly congresspeople would answer that question. Dent nervously laughed. Brownback look horrified and said, “I don’t think I want to answer that one, sorry.” Not even Pete King would take a swing.
By Anne Schroeder Mullins 04:00 AM

Here Are Random Tidbits From The National ALS Advocacy Conference and Advocacy Day on Capitol Hill

Normally I try to confine this blog to items in the news, but today seemed like a good day to share some of the information from the ALS advocacy conference for those who could not attend. I did not arrive at the conference until the middle of the Monday morning session, so the information here is not by any means comprehensive. Many hope that this year the Powerpoint files from presenations will be available both for those who could not be there and for those who were there and want to review the materials.

If anyone has additions or corrections, please contact me. I'm obviously not a journalist or a scientist or even a good note-taker, but here goes...

Highlights --

Our ALS Veterans. Yes, they make things happen.

Bo from the Paralyzed Veterans of America was simply impressive. It's good to know our ALS veterans have such a resource, and we could all use a good dose of "PVA attitude." On Capitol Hill when we mentioned PVA to health legislative assistants, that always lit up a positive response. The sheer number of PVA cases handled for PALS could provide some interesting data.

ALS Registry. The $5 million request to continue the pilots was an easy sell for our group on Capitol Hill. The common sense of counting noses and tracking environmental factors has finally hit home. There was confirmation that a web portal will be provided for PALS to self-report to the registry. That was reassuring to help insure that PALS won't be lost in the gaps among the four silos of data that are being coordinated to mine for PALS data.

NINDS Research. It appeared to me that there was a substitute speaker for Dr. Landis of NINDS. That was a disappointment since she is an excellent speaker who has an interesting feel for the ALS cause.

ALSTDI, etc. The presence of ALS stakeholders from other organizations was a positive sign that we're growing to realize that we need to exert an efficient offense and defense against ALS (and not each other).

Research in general. I'm not a scientist, so when I hear so much about growth factors, it's hard for me to discern what is different from these projects than the ones I heard about 12 years ago. The scientists who spoke were enthusiastic and obviously smart and concerned. They were all appreciative of the opportunities that ALSA provided with research funds. Stem cell session had PALS taking notes.

Answers to questions. There were mixed messages, and the problem may have been my brain. Audience q and a never had enough time. There's probably a message there.

Several attendee questions had a common theme -- if you had more resources could you develop a treatment or cure more quickly? Sometimes the answers were along the lines of nine women not being able to have a baby in one month. Other times the answers were that more funding was needed. My sense is that when they still have so many mysteries in the disease that nobody wants to commit a deliverable even if there were unlimited resources.

Nobody on the podium was able to deal with the ticking clock that PALS have as questions were addressed. The speed of science and the speed of ALS are two different things. The speed of registry development and the speed of ALS are clearly two different things. A PALS's question about "what would it take to get the Cadillac registry (not the VW) now" never really got an answer. There is a big meeting of registry pilot investigators in June in Atlanta, and after that we can expect some direction on what comes next.

When the question was asked about suspected ALS clusters, the registry gentleman from the CDC did not seem to be aware of the cited situation near the Kennedy Space Center.

ALSA has the difficult job of keeping advocates "on message;" however, I don't believe that the question regarding the ALS dollars within the NINDS budget was ever answered.

The question regarding the report in the Philadelphia press that ALSA wanted the Veterans ALS Registry reopened was answered. That report was not accurate. ALSA is focused on the national ALS registry now.

There were 499 registered for the conference and it was a motivated bunch of advocates!

Here is the save-the-date information for future conferences:
May 9-11, 2010
May 8-10, 2011
May 13-15, 2012

Now we need to make some progress so that PALS who were there this year can keep going back. Perhaps our goal should be to be able to cancel the 2012 conference because of ALS having been cured.

Tuesday, May 12, 2009

We Owe Much To This United States Senator

Senator Lisa Murkowski of Alaska - ALSA's 2009 Javits Award Honoree

Monday, May 11, 2009

We Owe Much To These Veterans

ALS Association Calls For Advocacy Action

The following is a call to action from the ALS Association. It's important. If we don't ask, ALS won't get...

If you can't be at this week's Advocacy Conference in Washington, you can still make a difference!

Today, we need every ALS Advocate who is not in Washington DC for the Advocacy Conference to contact their U.S. Senators and urge them to support continued funding for the ALS Research Program (ALSRP) at the Department of Defense. Specifically, ask them to sign the "Casey-Snowe" ALS Dear Colleague letter, which is being circulated in the Senate this week. The
letter calls on Congress to provide $10 million in funding to continue the ALSRP, the only ALS-specific research program at the DOD. Continued funding for this program also is critical because, unlike many other research programs that focus on basic science, the ALSRP is specifically designed to develop new treatments for ALS.

So please contact your Senators TODAY. The nearly 1,000 advocates from across the country who are attending the Advocacy Conference will put a face on this disease (and your message) when they meet with Members of Congress on Tuesday, May 12. With your help, we can send a loud and clear message to Congress. So please contact your Senators TODAY. And tell your friends, family and colleagues to do the same.

A sample letter you can send directly to your Senators is available in the Advocacy Action Center of our website, here: If you don't know the names of your Senators, don't worry. The Advocacy Action Center will identify them for you and allow you to send a message to them directly from the site.

A copy of the Dear Colleague letter being circulated by Senators Bob Casey (D-PA) and Olympia Snowe (R-ME) is available by clicking
here .

Thank you! Through advocacy, we are creating the roadmap that will lead to a cure!

Friday, May 8, 2009

Is This The Smart Way To Collect The ALS Dots?

File Under ‘Hodgepodge’
We need a national system of electronic medical records.
Jerry Adler
From the magazine issue dated May 18, 2009

A major change is occurring in medical record keeping, driven by the embarrassing realization that until now the information systems that keep track of Americans' cancer treatments have mostly lagged behind the ones they use to buy movie tickets online.
In health-care think tanks there is frustration bordering on panic over the danger that the nation will miss a historic opportunity if millions of American doctors adopt a hodgepodge of stand-alone systems that don't readily communicate with each other. "Whatever is done has to be accompanied by a whole series of other changes," says Shannon Brownlee, Schwartz senior fellow for the New America Foundation, which is in the forefront of studying this issue. "There are a whole series of good little ideas in health care now, but if each is implemented separately it won't add up to an improvement. We'll end up digitizing a really bad system."

At a minimum, experts say, a national electronic health-records system should do the following:
• Permit immediate electronic information exchange between doctors, saving time on taking patients' history and money on tests or X-rays that may have already been performed.
• Replace handwritten prescriptions with an electronic network linking doctors and pharmacies. This would reduce mistakes, save time wasted on phone calls back and forth and enable automated warnings of drug interactions and drug sensitivities.
• Facilitate "data mining" for information about new (or existing) treatments. A new drug undergoes elaborate trials for years before it goes on the market, involving hundreds or perhaps thousands of subjects—and then gets dispensed, potentially, to millions of patients. How it affects them is potentially lifesaving information that now gets reported anecdotally and spreads by word of mouth, if at all. But a computer that aggregated the findings of large numbers of doctors could detect rare problems, or even unexpected benefits....
• And, finally, establish standards of care for disease against which actual treatments can be measured

Should we be advocating for good electronic medical records (done right) for a lot of reasons?

There Are Important Stories To Tell

Yes, Bill, there are important stories to tell and we thank you.

Yes, walks are about much more than fundraising.

Just Cure It

This morning's WSJ has an interesting feature on the concept of "crowd sourcing" that seeks creative solutions from anyone and everyone by granting prizes. Websites such as have enabled the world's brains to swarm on scientific problems.

"The Science Prize: Innovation or Stealth Advertising?
Rewards for Advancing Knowledge Have Blossomed Recently, but Some Say They Don't Help Solve Big Problems" by Robert Lee Hotz

...Call it crowd-sourcing; call it open innovation; call it behavioral economics and applied psychology; it's a prescription for progress that is transforming philanthropy. In fields from manned spaceflight to the genetics of aging, prizes may soon rival traditional research grants as a spur to innovation. "We see a renaissance in the use of prizes to solve problems," says Tony Goland, a partner at McKinsey & Co. which recently analyzed trends in prize philanthropy.

Critics, though, dismiss the newest trend in prize-giving as a form of advertising that masquerades as public service -- and a clever ploy to attract top research talent at a discount. ...

For private philanthropists, it's a way to use charitable giving to force a breakthrough. The Virgin Earth Challenge, for example, promises $25 million to the first among us who can cheaply remove a billion tons of greenhouse gases from the air every year. The Prize4Life contest offers up to $8.5 million for breakthroughs leading to a treatment for Amyotrophic Lateral Sclerosis (ALS).

In growing numbers, corporate sponsors are embracing the prize challenge as a safe, inexpensive way to farm out product research, at a time when tight credit and business cutbacks have slowed innovation. Venture-capital investments have dropped by almost half since last year, reaching the lowest level since 1997, the National Venture Capital Association recently reported. "Here is a mechanism for off-balance-sheet risk-taking," says Peter Diamandis, founder of the X Prize Foundation. "A corporation can put up a prize that is bold and audacious with very little downside. You only pay the winner. It is a fixed-price innovation."

This seems like an excellent opportunity to open up further discussion. Are organizations such as Prize4Life trying to get an ALS cure on the cheap?

ALS is a disease unlike others since it is not understood well. There is no existing therapy. The patient population dies so quickly that there are never enough patients around at any moment in time to get the profit-motive juices flowing in a society that relies on profit-motive juices to prime the pump.

Perhaps crowd-sourcing is our only practical hope for a disease unlike any other. Perhaps Prize4Life isn't trying to cure ALS on the cheap. Perhaps Prize4Life is simply trying to cure ALS.

Nothing else has worked.

Rekha Basu Continues To Teach Us About ALS

This beautiful piece is about nurses. It also gives insights into ALS that only one who has been there would know. Please read on. This column says much about ALS.

From the DesMoines Register, May 8, 2009, Rekha Basu...

On May 3, at a ceremony in Hy-Vee Hall marking the start of National Nurses Week, 100 Great Nurses of Iowa were honored. I nominated one of them. This is an edited version of the remarks I gave:

When my husband, Rob Borsellino, was diagnosed 4years ago with Amyotrophic Lateral Sclerosis, we went from minimal interaction with the medical system to an increasing succession of appointments and interventions. There were the neurologists and the pulmonary specialist, the nutritionist and the occupational therapist, the respiratory and speech specialists. There were the hospital emergency-room visits, and ultimately there was the hospice.

When my husband, Rob Borsellino, was diagnosed 4 years ago with Amyotrophic Lateral Sclerosis, we went from minimal interaction with the medical system to an increasing succession of appointments and interventions. There were the neurologists and the pulmonary specialist, the nutritionist and the occupational therapist, the respiratory and speech specialists. There were the hospital emergency-room visits, and ultimately there was the hospice.

In every instance, nurses were the first point of contact and the last one, the gateways to the medical establishment and the buffers from the confusing, depressing, frightening world of serious illness.

The one common denominator was how little they had to work with. The illness was progressing rapidly, and every time we saw them, things had gotten worse.

Caught up in the daily demands of care-giving, I grew to depend on the network of nurses we interacted with, not just physically but emotionally. Often, I took my cues from the simple matter-of-factness with which they handled Rob. I watched them balance being part of our private lives with trying to stay unobtrusive. I
marveled at how they kept a game face even as they developed their own relationships with Rob, and grew to care for him as a person. Only once, sensing the end was near, did one break down around me.

During that time, one particular nurse entered our lives. We met her in a hospital emergency room after Rob had taken a fall and my sons, who were home, called an ambulance.

Sensing our family needed more than piecemeal visits to specialists, she became our primary line of defense. From then on, there was never a time - not one -when we needed help with something and she wasn't there, even if she was on vacation. It could be rushing to the house or consulting with doctors on the phone, or sleeping over when things were especially rough, or even finding something Rob loved, like sushi, and making sure he was well supplied with it.

Rob grew to depend on her cheery presence. It simply made him feel safer when she was around. And she went beyond caring for him to looking after me, my children, my parents and my mother-in-law, even fighting our battles with insurance.

There were some wonderful doctors, too, but also some who felt we should resign ourselves to Rob's impending death, and saw no point in aggressively treating an infection to gain just a few more weeks of life. It was the nurses - it was Deb - who understood the preciousness of every day together, and encouraged us to keep fighting every step of the way.

Fighting is important, even in the face of a terminal illness. It's the difference between feeling powerless and having some sense of control over your own fate.

Of course, there is an intrinsic paradox in the challenge of staying hopeful when there is objectively no cause for hope.
The nurses somehow balance this contradiction, keeping you realistic but forcing you to be optimistic.

I've written about the lack of due recognition and pay nurses get. But until the firsthand experiences of recent years, I had never viscerally understood how critical a part of the equation nurses are. Time after time, they are the heroes and heroines in a story plot they had no hand in writing, but which they must make the most of.

Nurses helped Rob remain optimistic and maintain his sense of humor and his joy of life. And he died feeling truly cared for, and even loved, not just by the community he had built over the years, but by those who came to know and look after him in his illness.

Because nursing, at its best, is work of love.

Wake Up And Smell The Coffee

Today's the day at Dutch Brothers...

May 8 all proceeds go to MDA for ALS research. Drink up. Thanks, Dutch Brothers! This is a benefit with a big splash that not only raises funds but also spreads the word about ALS.

Thursday, May 7, 2009

Michael Goldsmith Is Our Hero 4 ALS

From KSL TV --

Utah man to participate in MLB ALS day
May 6th, 2009 @ 6:12pm
By John Daley

PROVO -- A Utah man will soon be sharing center stage in New York with top baseball stars in an effort to fight the disease that claimed one of the game's biggest starts.

BYU Professor Michael Goldsmith led a push for more funding for Lou Gehrig's disease, or ALS. Now he's been invited to join the ceremonies in honor of Lou Gehrig in Yankee Stadium. "It's everything that I hoped for and more. I never imagined it would come this far," he said.

"It" is a national campaign to find a cure for ALS, the disease that struck down the
Yankee great Lou Gehrig, made even more famous in the movies. The disease has altered Goldsmith's body and his speech, but not his sense of humor. "If they asked me to throw out the first pitch, they will be very disappointed. My arm has gone from rifle to a water pistol," he said.

When Goldsmith was diagnosed with ALS, he turned to the game of his youth for inspiration. He wrote a column in Newsweek calling on Major League Baseball to join the battle against ALS.

That call was so compelling the MLB organization now plans major ALS
events on the Fourth of July, the date of Gehrig's famous farewell. Those who work with ALS patients say Goldsmith's efforts could be a fundraising and awareness game-changer.

"For the public, it will heighten the awareness of ALS, because it's known as the orphan disease; not a lot of people know about it," said Bernadette Tallon, critical nurse coordinator at University Hospital's Clinical Neurosciences Center. The Neurosciences Center's public relations director, Dennis Jolley, says the many baseball ALS events nationwide could help generate new funds for a disease which has been traditionally underfunded because it's so rare. Roughly 30,000 Americans have the disease.

"I think it's impressive how Michael has taken his condition and not rolled over, but said, 'I'm going to do something that may not benefit me, but may benefit others
who have it in the future,'" Jolley said.

Goldsmith says he's gratified to be making a difference. "Back in seventh grade, my English teacher bemoaned the fact that I was a better baseball player than a writer, so I guess in that way I've evolved," he said.

On July 4, players will wear a "4 ALS" patch on their jerseys. Each home team will deliver an on-field reading of Gehrig's farewell speech during the seventh inning stretch. Goldsmith says he expects to participate, but isn't yet sure in exactly what role.

The Silent Mannequins Continue To Speak Volumes

Mannequin display to highlight ALS impact in Florida
The display is making four stops on the First Coast this month.
Jeremy Cox
Story updated at 12:00 AM on Thursday, May. 7, 2009

Memorial Park in Riverside will be awash in mannequin torsos Saturday as part of an event designed to raise awareness about Lou Gehrig's disease.

The display, called "Piece by Piece," is the brainchild of the Florida chapter of the ALS Association. Amyotrophic lateral sclerosis is a nerve-wasting disease that slowly paralyzes patients, leading to death within about five years.

The 150 mannequin parts -- on display from 9 a.m. to 4 p.m. -- symbolize the destructive effects of the disease, organizers say. The display also will appear at the Modis Building in downtown Jacksonville on May 15, the Lightner Museum in St. Augustine on May 16 and the Plaza de la Constitución on May 17.

Wednesday, May 6, 2009

Claire Collier Set A High Standard For ALS Advocacy

ALSadvocacy didn't realize the whole story of Claire Collier until her obituary came up this week.

Here's the obituary.

Here's a recap of the Supreme Court case that she pursued.

Claire Collier certainly casts a tall shadow over a lot of our simple advocacy efforts. On her own she did more than many of us dream of doing.

Larry Brilliant Is Brilliant

I suggest giving it a Listen Now.

ALS isn't among his five new challenges, but much of what he has to say would serve us well.  We need to build a national resolve to solve ALS.  That won't happen if we work in a closed loop of advocates. We need to break out and get the word out and build a national will to deal with ALS.

It's Time To Prepare For The Sales Calls Next Week

For those calling on legislators next week (and for those who can't be there who will be emailing their elected officials), here are ALSA's  "public policy priorities" --

You will be making sales calls for the cause, and it pays to do some homework.  If you have questions about the priorities, this is a good time to email ALSA with your questions.

In proportion to recent government spending, these monetary and resource requests are just a small blip, yet it's never easy to get the point across about ALS.  Advocates are investing their personal funds, and many with ALS are investing their vitality, to be there.  That's a lot, but it's not enough.  We need to be direct and clear and make the sale.

Don't forget to ask for the business.

The More Things Stay The Same, The More They Stay The Same

Following was written in the DesMoines Register two years ago, but Rekha Basu's words ring as true today as they did then.
Published May 18, 2007
ALS activists fight for research, cling to hope

If you've ever toured the landmarks of Washington D.C., you know what an awe-inspiring experience it can be. With the memorial monuments and Capitol Hill as backdrops, anything seems possible - the victory of freedom and democracy over dictatorship, hope over despair.

But every May, one contingent makes a pilgrimage to the capital desperately seeking something that is not yet possible, in an age of space exploration, information super-highways and smart bombs: a cure for a fatal illness leading certainly to disability and death.

May is ALS Awareness Month. ALS is shorthand for Amyotrophic Lateral Sclerosis, the degenerative disease that claims nearly all the physical but not mental abilities of an estimated 30,000 people, on its way to ending their lives.Sixty-eight years after Yankees first baseman Lou Gehrig's diagnosis gave the illness its more common name, and 42 years after Iowan Henry A. Wallace died from it, a cure is nowhere on the horizon. Neither is any meaningful treatment. There isn't even a workable theory about what causes some people's susceptibility to the death of motor neurons that control speech, movement and breathing, leaving them prisoners in their own bodies.

Every May, the ALS Association brings together ALS patients from around the country and their families. They light candles at vigils, get briefings on the latest science and fan out to meet legislators to ask for more research.This isn't like lobbying for passage of a farm bill or a banking regulation. It's about life and death.

Underlying the determination is a palpable sense of desperation.This year's gathering was on Monday and Tuesday and was attended by more than 600 people. Iowa played a special role. It was the first year of the new Henry A. Wallace Public Service Research Award, named after the former vice president to Franklin Roosevelt, agriculture secretary and co-founder of Pioneer Hi-Bred. It honors a public official's efforts to promote ALS research toward treatment and a cure. It went to Iowa's senator, Tom Harkin, for his support of federal research and funding for ALS, including his sponsorship in April of an embryonic stem-cell research bill. Researchers say that may hold the key to finding a cure. The bill passed but was vetoed by President Bush.The award was presented Tuesday night by a Pioneer-DuPont vice president, Erik Fyrwald, and me. Last year, the ALS Association gave its Voice of Courage award to my late husband, Rob Borsellino, who at the time was dying from ALS and couldn't be there. Harkin accepted it on his behalf.Tuesday, Harkin told the audience the bill is one vote short of enough votes to override another presidential veto. He called on attendees to vigorously lobby for passage.There were several Iowans in the audience planning to do just that. Sue Lawler came from Mitchellville with her son and her mother on behalf of Sue's brother, 40-year-old Dave Johnston, who was diagnosed last April. Lawler said she's taken on the role of researcher because her brother and his wife are so busy with the challenges of daily living. Being there, Lawler said, was "a chance to make a difference with a disease that you have no chance with."She had been there for the candlelight vigil at the World War II Memorial Monday night, where I was one of three speakers. She had felt the camaraderie and resoluteness. But by the end of Day Two, after hearing about the agonizingly slow process of research, reality was sinking in. "Yesterday was more of a high," she said, "Today was a lot harder because you hear there are no real advances."Terry Fuller of Bettendorf has come every year since her husband's death from ALS in 2002. "At first I thought I was coming for him, but then I realized I was coming for myself," she said. She just needs to understand why he died.

From the stage in the majestic Carnegie Library Tuesday night, I looked out on a crowd dotted with wheelchairs and walkers and ventilators, and the family members who attended to their loved ones, caring and resolute, weary and scared.Against the grandeur of the setting and the festivities, I saw people clinging to hope knowing full well there is little reason for any in the immediate future. From that view, the "anything's possible" promise of Washington felt like too long term a prospect.

Tuesday, May 5, 2009

Thank You, Curt and Shonda Schilling!

...and it's a shorter wait for this hall of fame than for Cooperstown...

Just prior to a meeting with members of Congress on May 12, advocates will join The Association in recognizing those leaders in Congress whose extraordinary efforts have driven the ALS community closer to a cure. At the Celebration of Excellence Breakfast and Awards Presentation, The Association will present the Jacob K. Javits Public Service Award, named in honor of the former New York senator who lost his life to ALS, and the Henry A. Wallace Public Service Research Award, named for the former U.S. vice president whose life also was cut short by ALS.
During the reception, former Major League Baseball ALS-Star pitcher Curt Schilling and his wife Shonda will become the first inductees into The Association's Hall of Fame and will receive The Association's Hall of Fame Award.
The Schillings are being recognized for their sustained and dedicated efforts in advocacy, awareness and fundraising, for significantly impacting research and patient care programs provided by The Association to find a cause and cure for ALS, and to improve the quality of life for people living with the disease, their families and caregivers.

Are We Stuck In First Gear?

ALSspreadtheword has some commentary this morning that might be of interest to those who are going to advocacy day... and perhaps to those who aren't going this year but might consider the trek in the future --

Please keep working on ways to expand and diversify the base of active ALS advocates.  In theory we should have a base of very active advocates that grows and grows; however, we've not been very good at that in the past.  It's like we're stuck in a rut doing what we've always done, relying heavily on people with ALS at a moment in time to tell their stories.   That is certainly important.

We also need to get many others off of the bench and into the game.  It's not like we only have one bat for the whole team.

Monday, May 4, 2009

It's Time To Finish Packing Up The Winnebago

There are just eight days until Advocacy Day on Capitol Hill. Here are some thoughts that you may want to consider if you are participating. (May 3 entry) has a sign sampler for downloading that may tweak your creativity.

Anyone who spends a day out and about in Washington usually has a story to tell about the famous person seen walking out of the bank or the familiar face from the news shows in the cafeteria. Will those famous people see just another person in you, or will they see a person who is passionate about the ALS problem? Sometimes it just takes a sign or a sticker or a piece of apparel.

Here is a suggestion that was once given to me by a person who deals professionally in such matters. She said that your Senators and Members of Congress just love pictures. Be sure that if you have your picture taken with any of them to capture the cause in the picture. Have a sign ready that will make it clear that you are the ALS constituents and not just any constituents. Be sure that you're not only capturing pictures with your own cameras. Those young staffers often pull out office cameras and those pictures end up on websites and newsletters.

When calling on legislators, ALScounts tells the staffers that brief recaps of the meetings will be online at . It's amazing how the website is accessed by traffic from the House and Senate for a few weeks after Advocacy Day. I encourage you to try the same idea either by starting a blog or by posting on a Facebook page. Have some slips of paper with the url of your blog or page ready to hand to staffers. Your words in cyberspace will definitely keep them from forgetting any of their followup promises, too.

If you have a youngster in your group, this is a perfect opportunity to do a little journalism 101 project. That's a great way to make the day more interesting and to pass on some good information to other children and adults at home.

If you have a shutterbug in your group, shoot lots of pics and post them online with some commentary for the world to see.

Your calls on Senators and Congresspeople are sales calls. If you have a friend or relative who i s good at sales, tell him or her what you'll be doing and get some tips.

Have safe travels and bring lots of energy, and be assured that there are many people who can't travel who are most grateful for your efforts.

The United States must solve the ALS problem, and it won't happen if we sit back quietly.

Sunday, May 3, 2009

It's A Small, Small World

We often focus our ALS advocacy attention on the U.S. ALS, motor neuron disease, occurs worldwide.

Here's an interesting perspective from a person with ALS in the Irish Times.

Some things are the same as in the U.S.
It is difficult to live with the fact that nothing can be done for me or other people with motor neurone disease. Even those with cancer can fight it and there is a chance you might get over it. The hardest thing is to feel you are fading away.

and a few things are different
Currently, the State’s position is to exclude the MND community from medical card access because they are expected to die. Furthermore, this view appears to assume that managing MND is done over a shorter period of time and, therefore, there is less expense involved in a short-term illness – this is most certainly not the case.

MND Global Awareness Day will be June 21st. Perhaps it's time for all countries to unite on June 21 and make the world aware that this is a global problem that needs a global solution.

Friday, May 1, 2009

Fair And Balanced News On Augmentative / Alternative Communication

Or perhaps we should call it Augie Communication.

The following information is from ALSTDI:

On Sunday, May 3rd between 1:30-2:00PM EST (10:30 - 11:00 PST), AAC solutions will be highlighted on FOX News.

The segment features Augie Nieto. Augie was diagnosed with ALS almost four years ago and is Chairman of ALS TDI and founder of Augie's Quest, through which he has raised more than $18 million in support ALS TDI's research. He will be communicating in the segment with a DynaVox EyeMax System. In addition, we expect the segment to discuss how various AAC solutions can help people with many different conditions, including autism, stroke, cerebral palsy, and traumatic brain injury.

Few things in life are as fundamental as the ability to communicate. At DynaVox, we have been working alongside customers, caregivers and professionals to assist with communication and learning for those who need it most. We expect this segment to will help raise awareness of these solutions.On Monday, May 4th, you will find a page on the DynaVox web site where we hope to be able to link to the FOX News video, as well as other information that will be of interest to those new to AAC. Please feel free to forward this on to any families, SLPs, teachers or others that might be interested.

Robert A. Goldstein
Director of Communications
ALS Therapy Development Institute

Meet 28 People With ALS

And for each of these, there are well over a thousand other Americans with it at any moment.

Odds are that many of these won't be around to read next year's featured patient vignettes.

Next year's featured patients will include some men and women who have never even heard of ALS today. Today they're thinking about golf and gardening and baseball with the kids. Next year it will be feeding tubes and wheelchairs and Medicare paperwork and Lou Gehrig night at the ballpark.

Is it not time to stop the wicked ALS revolving door?

Bob Costas and Cal Ripken Jr. Speak Of Lou Gehrig

What an excellent conversation for any baseball fan! Thank you, MLB, for 4 ALS.

Baltimore Ravens Rock

It's nice to see a high-visibility employer be so supportive of an employee with ALS. Many could learn from the Ravens' organization.

Thank you, O.J. Brigance and thank you, Ravens!

It's May, It's May, That Lusty Month of May

It's ALS Awareness Month.

Will the world be more aware of ALS in June than today?

It's also awareness month for a whole lot of other causes.

From the Point Pleasant, WV Register --

May comes warmer weather and thoughts of summer being just around the corner. However, the month also is a time to observe and be aware of several causes. On the health front, May is observed at cancer research and high blood pressure education month. In recognition of the need for high-quality, innovative cancer research, the United States Congress has designated May as National Cancer Research Month. National Cancer Research Month is intended to help renew the nation’s focus on cancer research with the goal of increasing the spectrum of cancer research and care in the United States. May also is National High Blood Pressure Education Month. According to the Centers for Disease Control, approximately 73 million people in the United States have high blood pressure. High blood pressure increases the risk of heart disease and stroke, with are the first and third leading causes of death in the nation. The CDC recommends that people have their blood pressure checked regularly. Lowering high blood pressure can reduce new events and deaths from heart diseases and stroke and can be achieved through lifestyle modifications alone or in combination with prescribed medications. Key lifestyle changes include weight reduction and control, adequate physical activity, moderation in alcohol intake, reduced dietary sodium and increased dietary potassium. May is a time to be aware of the environment as well and has been designated as Clean Air Month. According to the CDC, air pollution is caused by undesirable substances that enter the earth’s atmosphere, and has become a large problem, especially in larger cities. Several studies have shown the links between pollution and health effects. Everyday conscious decisions, such as planning trips to save gasoline, carpooling and choosing efficient lightening appliances, can help reduce air pollution. As the warmer weather brings more outdoor activities, such as cycling, May also serves as Bicycle Safety Month. Following safe techniques is the first step in preventing bicycle related injuries and deaths. According to the CDC, more than 500,000 people in the United States are treated in emergency departments, and more than 700 people die as a result of bicycle related injuries. Wearing a helmet correctly is a major step in bicycle safety. Being aware of traffic, wearing bright clothes and avoiding biking at night are other ways to stay safe. Other causes being observed include Lou Gehrigs Disease (ALS) Awareness Month, National Arthritis Month, Heal the Children Month, Tay-Sachs And Canavan Diseases Awareness Month, Meditation Month, National Stroke Awareness Month, Fibromyalgia Education and Awareness Month, Asian Pacific American Heritage Month, National Foster Care Month, Get Caught Reading Month, National Teen Self-Esteem Month, National Neurofibromatosis Awareness Month, Family Wellness Month, Mental Health Month, Haitian Heritage Month, National Physical Fitness and Sports Month, Older Americans Month, International Multiple Sclerosis Month, Osteoporosis Prevention Month, Better Hearing and Speech Month and Hepatitis Awareness Month.

Will ALS stand out with a very big splash in the next 30 days? It will take a lot of noise to be heard.

Lou Gehrig's Disease... no known cause... no cure... terminal... underfunded... vicious... Will more people understand ALS next month than did today? Will we preach beyond our choir?