Monday, April 27, 2009

There Are Piles and Piles Of Money Between You and Help For ALS

There are piles and piles of lobbying money wanting access to the same people we will want to see on May 12, ALS Advocacy Day.

The words "piles and piles" really don't give the enormity justice.
See the image at the left from with the 2008 lobbying expenses by industry groups. Those are not campaign contributions (those are whole different piles of money). Those are lobbying investments. Look at those numbers!

In one year America has spent these piles of money on gaining access to our legislators. Those piles of money overshadow America's anthill investment in ALS research. What is wrong with this picture?

Bring your "A" game to Washington for sure. The ALS message needs to be heard.

p.s. Someday I would love to see an ALS Advocacy Day prix fixe menu at some of the nice restaurants where the decision-makers lunch with the lobbyists. Chilled Ensure, Jevity with a Liquid Centrum Garnish, Puree Surprise, Filtered Mashed Potatoes, Gravity-Fed Cabernet Sauvignon...

Saturday, April 25, 2009

High Number Of ALS Cases Near Kennedy Space Center

This cover of Time Magazine is a fake, however the message is horribly factual. 
A deadly disease could be threatening residents living around the Kennedy Space Center. Researchers have found an alarming number of ALS cases, also known as Lou Gehrig's disease, in neighborhoods near the space center.
Some former NASA workers fear they were exposed to something that may now be killing them.
There are 24 known cases of ALS within a 25 mile radius of the Kennedy Space Center. According to the ALS Association, that rate is about 40 percent higher than the  national average.
A spokesperson for the Kennedy Space Center says NASA takes precautions around all toxic substances, and since there is no known cause of the disease, NASA cannot say something at the Space Center is to blame.
A new ALS National Registry approved by congress last year, but not yet funded, will  get a more accurate count of how many people around the Kennedy Space Center are fighting the disease and how many have already died from it.  The fight for the ALS Registry Act has been six-years in the making, introduced by Rep. Eliot Engel.  It has endured two sessions of Congress and held by Sen. Tom Coburn of Oklahoma for a period of six months.  Brought to the Senate floor by Sen. Harry Reid and passed without objection and finally signed by President Bush.
ALS usually strikes people between the ages of 40 and 70-years-old. Scientists have not yet nailed down the risk factors. However, two months ago, the Veterans Administration acknowledged military personnel also had a higher risk of contracting ALS.

Thursday, April 23, 2009

Here's A Suggestion For Those Who Thought Torture Was Such A Great Idea

You could have saved the American taxpayers a lot of money and trouble.
You could have saved the expense of those specially trained torturers and all of that special fake drowning equipment and those special walls and torture neck braces.
You simply could have told the detainees that they have ALS. They would look at you with a quizzical look and you could have a physician (or a fake physician) explain that there is no cure. It's a downhill slide and is rather difficult. They may not last long and soon they will loose their ability to speak and eat and they'll have to deal with choking. The legs and hands and arms will start to go, too. They'll require the help of someone for most of life's most basic functions. You could hand them a discounted copy of Tuesdays with Morrie for details on those most basic functions. You could slip in the tidbit that they'll keep all their marbles and will be conscious and aware of every second of the decline. Oh, and you could mention that there is no facility or medical genius in the world that can stop ALS.
Now, that's torture!

Wednesday, April 22, 2009

Nobody Knows.

ALS is a phenomenon that mutated my great grandmother's genetics. She passed the ugly disease onto her children. My mother and two of her first cousins inherited the gene, and were taken by the disease. ALS ravaged my mother's body, stole two years worth of smiles, the ability to eat her favorite peach pancakes and all the weight from her slight body until she was only 45 pounds. She died as peacefully as she could in her husband's arms, but her battle against ALS was anything but peaceful. Eleven years after my mother's death, I am still battling ALS. Most people I talk to don't even know what ALS is. They don't know that there is no cure, no treatment, no cocktail of miracle pills, no therapy, no government funding for research to even FIND any of that. Nobody knows that ALS is an orphan disease. Nobody knows that it costs an average of $250,000 a year to care for a person with ALS (PALS). Nobody knows that military Veterans have a 60% greater chance of developing symptoms of ALS due to exposure to vaccines and other unknown variants. Nobody knows that the government has finally realized their grave error and is now funding Veteran's care. Nobody knows that some family's are forced to suffer loss after loss to ALS because of the mutation in the SOD1 gene and others. Nobody knows that upwards of 500 advocates gather yearly in Washington, DC to raise government awareness of ALS. Nobody knows that the reason we are an orphan disease is for the plain simple fact that ALS does not let us live long enough for our ALS ACCENTS to be heard or counted! Today, I am very excited to hear that my Oregon Governor, Ted Kulongoski, has officially declared May to be ALS AWARENESS DAY. Maybe this will make a difference in the awareness of this 'horrible life stealing without a chance' disease called ALS.

What is this thing called March of Faces?

I bet many folks, even those in the ALS community, may not have heard of the ALS March of Faces. Conceived by a person with ALS who has subsequently lost his battle with the disease, and his girl friend, March of Faces consists of banners with the faces of those either living with or who have died from ALS.

ALS is also know as Lou Gehrig's disease affects a relatively small number of patients in the U. S. It is estimated that around 30,000 are living with the disease at any one time. The number remains relatively constant becasue, regretably, the number of new cases approximately is the same as the number dying. It has been dubbed and "orphan" disease and one that has limited profit potention for the pharmaceutical companies.

March of Faces literally gives faces to those with ALS, a humanity that is often lost in just words. Hundreds a banners, each with twenty faces, have been produced throughout the U. S. and Canada.

So now you know about ALS March of Faces. Why not help get the word out and maybe see one at the next ALS walk in your area?

Sunday, April 19, 2009

Let's All Breathe Again, New Stem Cell Rules

New stem-cell guidelines released yesterday by the National Institutes of Health would limit federal funding of the research to embryos left over at fertility clinics and prohibit funding of embryos made by cloning or certain other methods.
"We are likely to increase greatly the number of human embryonic stem cells available for federal funding," acting NIH director Raynard Kington said.
"This is a remarkable development that promises to speed the research that one day may fundamentally change the way we do [medical] research," he added.
The guidelines restrict funding of work on cells made using certain more experimental methods, such as creating stem cells from a human egg only, a process called parthenogenesis, and a cloning technique called somatic cell nuclear transfer.
They also would prohibit funding of work on embryos created specifically for research purposes, with the aim of keeping the money going to work using cells taken from embryos that parents donated after they decided not to try to use fertility clinic embryos to create a pregnancy.

Saturday, April 18, 2009

There Can Be Value In Walking In A Good Old Fashioned Demonstration

Being myopic on multi-level fundraising can cost the ALS cause a big advocacy opportunity. If an ALS walk simply meets its fundraising goal, is it a success?

One of the large ALS not-for-profits has walks that are its signature fundraising events. The walks literally keep many chapters in business. They have found a multi-level marketing formula that works to raise funds. Much like the bundlers of political campaigns or the purveyors of some soap products or expensive juices, the team captains build teams of donors who build teams of donors. A celebrated captain at the top of a pyramid can be responsible for very large accumulated donations without ever having written a personal check. People who work with or go to church with or go to school with people currently dealing with ALS are usually glad to jump on the pyramid.

Sure, the organizers add advocacy to the walks. Often chapters have advocacy tables at the walks where form letters to send to legislators are offered for walkers’ signatures. There are opportunities to pick up a brochure or sign up for a mailing list.

Should walks not be much more than meeting fundraising goals and signing form letters?

Walks are an excuse to talk about ALS in the media. Every time a person views “ALS” on a community calendar in a magazine or newspaper, that helps to build the reminder that Lou Gehrig’s Disease is still around and needs to be dealt with. Thousands of people see and hear those community calendars. On-air interviews and health segments are much easier to get when there is an upcoming event. Walks are reasons to knock on corporate doors not only for sponsorship checks but also to engage groups of employees in a disease that they may not be aware of. Businesses write generous checks to sponsor walks. It’s not all that hard to engage them a little more and ask them to put some walk t-shirts on their employees the day before a walk (and even better yet, to then send those employees to the event). Even if a business doesn’t have the budget to be a sponsor, it’s easy enough to ask them to advertise a walk in their internal communications. Bingo… more eyes see “ALS” and the impression is registered. Think of how many eyes can see handbills advertising “ALS” walks. You can’t walk into a medical school or a hospital every day to tack up signs about ALS, but you sure can get by with it when a walk is coming up. Healthcare professionals and tomorrow’s research scientists can get a subtle reminder of a disease that needs a cure. A yard sign on an advocate’s lawn reminds everyone who passes by that ALS is still around. A huge crowd at a walk makes a statement in a community and has an added benefit of being a media magnet.

Using walks to spread the word about the cause enhances advocacy and awareness and will build a base with roots (in addition to that top-down pyramid), and it can actually enhance the fundraising over the long haul. Ask the ladies in pink.

Tuesday, April 14, 2009

Red Sox's ALS fan Paul Szantyr dreams of book home-run

Die-hard Boston Red Sox fan Paul Szantyr has written his memoirs of a monster that has no color, not even Green. Paul's monster is ALS (amyotrophic lateral sclerosis) or Lou Gehrig's disease which challenges him daily.  If Major League Baseball or 4-ALS Awareness is in need of a real baseball story, here's your chance. He describes what it's like to be a member of the Red Sox's Nation and his gratitude to the number one ALS Advocate, Curt Schilling. All he needs for this home run book is a publisher.
From Paul's book he describes his situation:
Nobody EVER thinks it will happen to them! 

It's true, isn't it?  We're just not wired to think that way.   Nobody leaves their house in the morning thinking, 'Today, I just might come down with an incurable illness, so I better make these next few hours count for something.'   We are saddened when we hear that it's happened to someone else that we know -it's always the other guy, but me?  Naw, not me!
Yet, here I sit, almost 9 years since the first symptoms of Lou Gehrig's disease initially presented themselves, and I have a lap-full of regrets to ponder with no means of resolution on my immediate horizon.  In my on-going conversations with the Almighty, I often ruminate about how He could trust me to get my priorities right now; that if I could get my health back, I wouldn't squander opportunities to be a better Christian, a better husband, or even a better friend.  I know it's still not too late, but one of my fears is that if I suddenly become that person now, God will just think that I'm trying to get into heaven.

Baseball fans will appreciate the irony of the title: 
"How Does A Red Sox Fan Get Lou Gehrig's Disease?"
It has been seen by one publisher, and it is batting 1.000 for rejections.

Wednesday, April 8, 2009

How Do We Cultivate A Diverse Garden Of Advocates?

ALS certainly gets the attention of a person, of a family, of a neighborhood, of a workplace, of a church, of a school whenever ALS strikes. How do we maintain that attention long after the person with ALS has died? How do we cultivate the attention of people who may never have seen ALS? How do we engage those with only a peripheral knowledge of ALS?

Do we have a garden with just one or two rows of lettuce that we keep replanting every 3-5 years?
Do we need a more varieties of crops?
Do we need a bigger garden?
Would we embrace tomatoes and corn and potatoes and parsley and even zucchini?
Can we make room and care for a few hundred acres of soybeans?

Will our legislators hear a more actionable message if it comes from a far more diverse constituent base?

Tuesday, April 7, 2009

Stem Cell grants going to the California State University system

Campuses in the California State University system will receive about $16 million for stem cell research, one of the first grants after President Barack Obama's lift on federal funding for embryonic stem cell research.
Embryonic stem cells are the beginning cells where all tissues are formed and research in the sector has been opposed due to many seeing it as destruction of human life, as embryos are destroyed in the process of extracting the stem cells, according to California Institute of Regenerative Medicine, a state agency created in 2005 as part of Proposition 71, will be providing the funds. San Jose State University and San Francisco State University are two of the 10 state universities receiving a grant, with about $1.7 million awarded to each university.
"It's cool to see SJSU be a part of this research," said Emily Benstead, a sophomore nursing major. "We're involved with a project with other schools such as Stanford and UC Berkeley."
"As a future biology researcher, I'm happy to see science allowed to do what it's supposed to do," said Thao Le, a senior biology major. "And I'm glad SJSU is a part of it."