We Hope Scott Pelley Remembers Steve and ALS

If you saw the 60 Minutes piece on the 21st Century Snake Oil , then you saw Steve Watters. He was an ALS patient who went undercover with Scott Pelley to expose the con man with a bogus stem cell cure for a price. Steve was always a thoughtful contributor on ALS message boards, and he turned out to be a huge contributor to the awareness of ALS in his role on that 60 Minutes segment.

Steve Watters has died.

Another nice person. Another achiever. Another contributor. Another funeral.

What Are The Odds?

ALS advocacy involves starting the simple conversations that cause so many connections to ALS to come to light.

Last week alsadvocacy was in seminars with 20 people. Wearing a www.stealingpieces.org shirt to breakfast one morning was a conversation starter. A couple said that they had known General Tom Mikolajcik, a hero in the fight against ALS who enabled the service-related benefits for veterans stricken with ALS.

Later the next day prayers were requested for a friend of a meeting leader who had just received a serious diagnosis. It was ALS. Unbelievable.

That caused even more conversations in the group about the disease. One gentleman shared that he had lost a college roommate to ALS. Another talked of his uncle who died from it.

Twenty people. So many ALS connections. This disease is not as rare as people like to think. It strikes and kills quickly. It then moves on to strike and kill more people. We must keep the conversations and connections alive so that the world might realize that it is a problem urgently in need of a solution. We must speak up for all of those who have been silenced by ALS.

The Leadership And Results Are Clearly Refreshing

This message was posted on the ALS Association's facebook wall... from the ALSA President and CEO --

I had the distinct pleasure this afternoon of receiving a phone call from Eddie Martiny, General Manager, and Marc Sherman, FM Operations Manager, of the Clear Channel stations in Houston. They were calling at the request of Mr. John Hogan, President of Clear Channel Radio, who received my letter asking for a public apology. They were interested, compassionate and want to help us with an awareness campaign through their sister stations. They also gave me permission to share with you the words of the public apology that was made on KKRW station on Tuesday:

“KKRW and Walton & Johnson would like to apologize for insensitive remarks about Stephen Hawking’s physical condition that have caused distress to people with disabilities, including those with ALS – which Professor Hawking suffers from – and their families. We recognize that there are many people in Houston who suffer from serious, debilitating illnesses and no offense to them was intended.”

They are working on producing public service announcements, and will run them on all of their stations during the next couple of weeks. I urge all of you to join me in thanking them for their concern and their response to the ALS community. I want to go on record with a huge thank you to the management of Clear Channel Communications, who recognizes the mistake that was made and are now doing everything they can to help us.

Clearly the use of online media to get Clear Channel's attention along with the refreshing ALSA leadership to meet the problem head-on made a difference.

This is ALS advocacy. This is ALS awareness. This is newsworthy. This is a huge step in a good direction.

Awareness Is Imperative To Solving This Mystery

The fight against ALS ignorance needs this kind of leadership. Following was posted on the ALS Association's facebook wall:

Mr. John Hogan, President
Clear Channel Corporate
200 East Basse Road
San Antonio, TX 78209


Dear Mr. Hogan,


I am writing this letter in response to comments made on the Walton and Johnson show on Monday, May 16th. During their time on the air they made comments about Stephen Hawking and his battle with ALS. The comments were ill informed and offensive to the over 30,000 people and their families who struggle with this disease every day. As President and CEO of The ALS Association, I invite your station to join our efforts to educate people about this terrible disease. Our mission is to “lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.”

As the only organization dedicated to this fight on all fronts, I hope you can understand why we were offended by the on-air remarks. ALS is a deadly disease that robs people of their body but not their minds. Within a trapped body, a person suffering from ALS lives with the daily challenge of communicating with their loved ones as well as the outside world. As you can imagine, many of these people listen to your radio station as a link to the outside world which is one reason the comments were so insensitive. ALS patients struggle each and every day with a disease that has no known cause and no cure. Piece by piece their bodies are robbed of everything but their ability to think. If you will, think about being perfectly still—not even so much as a blink for two or three minutes, and then imagine what that is like for someone 24 hours of every day.

I would like to direct you to our website at www.alsa.org so that you can be better informed about this horrific disease and the fight we are leading to help those who live with the disease. There you will find stories of courage and determination as well as stories that will break your heart. They are stories of mothers, fathers, sisters, brothers, daughters and sons who fight a battle none of us wish for them. It is a disease that can strike any one of us and knows no boundaries of age, race or gender. At any given point, someone within your Clear Channel family might very well be the next diagnosed case.

Awareness is imperative to solving this mystery. Please turn this negative into a positive by issuing a public apology. The ALS Association will be more than happy to supply you with educational information so that your listening public has the opportunity to help us in this fight.


Sincerely,



Jane H. Gilbert
President and CEO
The ALS Association

This Was A Powerful Message In Our Nation's Capital

This Is A Right-To-Life Issue

Earlier this week some radio buffoons decided to do what radio personalities sometimes do to boost their ratings, and they made some horribly disrespectful, ignorant statements regrading Stephen Hawking's physical condition. Stephen Hawking has motor neuron disease. ALS (Lou Gehrig's Disease) is also a form of motor neuron disease.

Rather than have an intelligent discourse, the radio clowns made fun of the man's physical state.

This is a right-to-life issue. I'll not give the fools with a radio show the benefit of added publicity on this website (your friend Google can find them if you're that curious). All who are interested in respect-life issues need to pay attention and demand respect for those who are dealing with ALS. I also expect our ALS organizations to make some simple and direct statements about respecting the valuable lives of those with ALS.

Thanks, Governor

"I want to take the diagnosis and try to do good."

http://www.boston.com/lifestyle/health/articles/2011/05/19/former_massachusetts_governor_cellucci_to_take_als_fight_public/

He'll not only raise millions for research, he'll also put ALS on the radar of many movers and shakers. ALS needs to be moved and shaken.

We Need To Keep Making People Curiouser and Curiouser

http://dcist.com/2011/05/shirts_memorializing_als_sufferers.php

Take A Look At This, Washington

The Piece by Piece display made a big impression in Freedom Plaza, today. This is ALS awareness that people will remember.

It's Great To Preach To This Choir

See ALS Association's facebook wall with the activities kicking off the 2011 Advocacy Conference.

A large youth choir sang at the candlelight vigil.

One of these kids may be tomorrow's President to raise the public urgency of ALS... or tomorrow's Nobel-prize winner who finds the cure. None of these kids will forget ALS.

It Was A Good Day For ALS Awareness

Nothing Is Easy With ALS

This weekend hundreds of ALS advocates are converging on Washington, DC.

You may remember when travel was fun. You got all dressed up and got on the train or airplane for an exciting trip and a free deck of cards. How that has changed. Even for the most hale and hardy, airport routines and demitasse airplanes and delays take a lot of fun out of the experience.

Add ALS to that equation, and the challenges and frustrations of travel become incredible. The disease itself turns simple things into barriers. Those simple things and barriers are both physical and human. Most transportation professionals are clueless about ALS and make the journey even more difficult.

People with ALS who try to make a difference by contributing to ALS advocacy are our heroes.

Perhaps the rest of us should figure out how to do more to contribute to ALS awareness for everyone our heroes encounter on their journeys.

This Disease Is Just Wrong!

Former Lobo Pat Grange in a battle: krqe.com

You'll See Things You've Never Seen On Broadway

Here's a pic of Daley Plaza in downtown Chicago this morning.

It's ALS Awareness Month in a big way in the Windy City!

Take Nothing For Granted

We without ALS take so much for granted. We grab a quick breakfast and get dressed quickly and jump in the car to go to work. We talk on our cell phones and tap on our keyboards. We make vacation plans months in advance.

With ALS you take nothing for granted. Every day steals some ability that you'll never get back. The disease runs an often fast course and you don't put off plans because you don't know what challenge tomorrow will bring.

The MDA runs a series of patient vignettes for ALS Awareness Month.

http://awareness.als.mda.org/

Take a look at the May 1 honoree. He didn't make it to May 1. ALS stole him on ALS's own wicked schedule. That's ALS. Mr. Wright teaches us about ALS in a way that he could never have planned for ALS Awareness Month.

ALS -- The take-nothing-for-granted disease.

They're On The Road Again

Here is a nice ALS Awareness Month shout-out for Steve Franks who is the ultimate ALS awareness advocate --

http://www.alsa.org/news/public-awareness/als-awareness-month/florida.html

After its downtown Chicago debut this week, the display will move on to Washington, DC, next week for three full days.

Once people see the exhibit, they will never forget ALS!

Here's the schedule --

http://webfl.alsa.org/site/PageServer?pagename=SP_2009tour

For advocates attending the conference and activities in Washington, DC next week, here are some suggestions. Sunday (Mothers' Day) the Navy Memorial location is not far from the conference hotel and is beautiful setting. On Tuesday when you call on legislators on Capitol Hill, please invite the staff members and legislators you meet to stop by the display at lunch time or any time during the day. It's an easy walk from their office buildings, and once they see the display, they will remember ALS. That spot just west of the Capitol Building makes a beautiful photo stop for advocates to enjoy themselves.

Please pass this information on to anyone you know who will be in the Chicago area this week or in Washington, DC, next week. It's a special ALS awareness opportunity and a chance to add some punch to ALS Awareness Month.

Drink One For Dane Today

Shoot, drink two or three for Dane today. This is a great effort by Dutch Brothers to remember their bro and to raise a lot of ALS awareness and funding. www.dutchbros.com

Irony, Thy Name Is ALS

This must be ALS awareness week in the San Francisco Chronicle.

Here is an interesting article on Dr. Olney, a noted ALS specialist who received the diagnosis himself.

Dr. Richard Olney in last stages, study of disease
Carl T. Hall, Special to the Chronicle

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/04/25/MNHL1J5LEV.DTL

Olney's most enduring contribution to the ALS field may have less to do with the details of his final study than the commitment he has shown, relentlessly attacking a disease that soon will kill him.

It's a lesson of persistence and personal bravery that clearly has impressed his own doctors.

Corey Reich Has A Wise Father

"The main challenge... is the visibility for ALS."

"Young man with ALS doesn't give in to despair"
by David Wagner in the San Francisco Chronicle

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/04/25/DDDB1J3L3R.DTL

Here Is Your One-Page ALS Advocacy Calendar

Back by popular demand ;-]

http://tinyurl.com/437t5n3

If anyone spots errors or omissions, I'm glad for your feedback and it's easy enough to update.

Just A Regular Guy With A Horrible Disease...

...and wants to do something about it!

Neurology Now Features Our ALS Awareness Rockstar!

Neurology Now is an excellent publication from the American Academy of Neurology. Its articles are interesting for anyone, whether or not you are affected by a specific neurological condition.



Toward the end of each issue there is a photo-feature page spotlighting Neurology Now readers. When I turned the page in my April/May 2011 issue, I was greeted by a picture of "Piece by Piece" and Steve Franks. What a wonderful and timely honor for Steve and this moving display which will be in our nation's capital in just two weeks.



http://journals.lww.com/neurologynow/Fulltext/2011/07020/Pictures_of_You__A_Photo_Series_of_Neurology_Now.22.aspx


The publication is free for the asking. I can't recommend it highly enough. ...and I can't recommend experiencing the Piece by Piece display highly enough, either.



Thanks, Neurology Now.

Let's Speak With Our Threads During ALS Awareness Month in the U.S.!

May is U.S. ALS Awareness Month.

It is also the month when advocates will gather in Washington, DC, to take the case for increased research funding to our legislators.

We can all be walking billboards to spread ALS awareness and to show solidarity in the fight. How about adding an "ALS Is Stealing Our Loved Ones Piece By Piece" t-shirt to your wardrobe? They attract attention and they are nice quality shirts. A sea of shirts in our nation's capital or in your hometown will be a nice start on ALS Awareness Month.
Shirts are available online from the ALS Association Florida Chapter store. The price is $15 plus shipping.

It's a nice way to exercise free speech on behalf of those who can't speak. It's a great way to draw attention to ALS.

Here Is An Interesting Trip Down Memory Lane

Remember that on October 8, 2008, President Bush signed the ALS Registry Act into law after literally years of work by ALS advocates and organizations.



Only within the last several months some helpful documtation was added to the CDC's ALS website at https://wwwn.cdc.gov/ALS/ALSResources.aspx .



When you have some relaxing reading time, take a look at the 2009 ALS-MS Annual Meeting Summary Report - PDF file which you can also download here.

As you peruse this report that puts you in the midst of the group guiding the development of the new ALS Registry for the United States, keep in mind that the meeting was held around eight months after the ALS Registry Act had been passed. It was also held sixteen months before the ALS Registry online web portal launch.


Every month represents around 500 American deaths from ALS.

Interesting reading, eh?

We Thank Those Who Made The Case

Following is from an email from the ALS Association --

Thank you to everyone who contacted their Members of Congress urging them to support continued funding for the ALS Research Program (ALSRP) at the Department of Defense. We are excited to report that your outreach has made a difference!!!

Not only did Congress continue funding for the program, but they provided a $500,000 increase over last year! A total of $8 million has been appropriated for the ALSRP for Fiscal Year 2011. The funding was included in the budget agreed to by Congress and the President and which was just signed into law. This increase in funding is especially significant considering that Congress had threatened to eliminate medical research programs at the DOD, including the ALSRP. It is clear that your advocacy produces results!

We anticipate that the DOD will quickly begin to request research proposals later this spring and summer so that the funding can be used to advance the search for a treatment and cure as soon as possible. This year's Advocacy Conference in May also will feature a plenary session highlighting research made possible by the ALSRP.

Thank you again to everyone for their outreach. This funding would not have been possible without your advocacy! Stay Involved!

While continued funding for the ALSRP is a tremendous victory given the current fiscal climate and the efforts on Capitol Hill to significantly reduce spending, we need your continued involvement. With the FY 2011 budget now complete, Congress likely will seek to cut programs and funding in FY 2012, including medical research programs at DOD. Therefore, your continued advocacy is more important then ever! We will keep you up-to-date as the FY 2012 budget process moves forward so please keep an eye out for our alerts. We will let you know when your outreach can make the most difference. Thank you again for all of your efforts. Together, we are making a difference. Together, we are creating the roadmap that will lead to a treatment and cure for ALS.