ALS Advocacy

ALS Advocacy
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.

Tuesday, June 30, 2009

Katie Couric CBS Evening News ALS Story Tomorrow Night

A teaser (much softer than Sunday's) ran during tonight's news regarding the story on how a new treatment for Lou Gehrig's Disease might be as close as your skin. It said that the story would run tomorrow (Wednesday). The "cure" word wasn't used in this teaser.

To all those who landed here looking for news of the story, welcome. Please stop by regularly. We hope that CBS News will have something good for us all to see posted on their website tomorrow.

Some Minor League Clubs Get Into The Spirit of 4 ALS, Too

http://www.oursportscentral.com/services/releases/?id=3852658

...and this will make Lou Gehrig more than a name in the record books to many young baseball fans.

They Were There From New Jersey

http://www.newjerseynewsroom.com/professional/lou-gehrigs-speech-and-the-manville-nj-connection

Monday, June 29, 2009

O.J. Brigance Continues To Inspire

http://blogs.nfl.com/2009/06/29/latest-from-the-nfl-rookie-symposium/

My personal best moment thus far was having a brief chat with Ravens’ director of player development O.J. Brigance. I covered O.J. back in the mid-90s when he was a special-teams player with the Dolphins and I worked with The Miami Herald. O.J. and I would chop it up back in the day about some football related stuff but mainly, we’d talk about our families. He would jokingly refer to himself as a wise man, citing his “grey beard of wisdom,” as his status symbol.
O.J. is in a wheelchair now, having been stricken with Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease) in 2007. He’s been featured in several television and print pieces and is probably more known now then he was as a player. When we saw each other, we both smiled and he said, “Long time.” Then, referencing the old days, he said, “I shaved.”
His body may be a shell of what it once was but O.J. Brigance is still a special man.

It Has Been An Interesting Day At www.alsadvocacy.com






The teaser that ran on CBS news last night, resulted in a record traffic day today on this site. The big lesson for today is that people interested in ALS are searching online for hope and for facts (and they watch 60 Minutes).

Here are the top search strings that found this site today.

katie couric als skin
cbs katie couric als skin
katie couric als cure
katie couric cure for als
cbs evening news als
michael goldsmith
als cbs evening news
als clusters
cbs als
cbseveningnews special report on lou gehrig disease
katie couric 2009 als
katie couric als
katie couric als story
katie couric report on als
"katie couric cure for lou gehrig's disease"
"katie couric" als story 2009
60 minutes als june 28, 2009
als "katie couric" cure
als "katie couric" skin cbs
als advocacy group
als and your skin
als cbs news couric 2009 skin cell
als cure 2009 couric
als cure and katie couric
als cure katie couric
als cure, katie couric
als disease report by catie couric
als katie couric promo
als report on cbs evening news
als, cure, katie couric
alsadvocacy
cbs evening news cure for lou gehrig's disease
cbs evening news katie couric lou gehrigs
cbs evening news lou gehrig
cbs katie couric lou gehrig's disease
cbs lou gehrig's disease story june 29, 2009
cbs news a cure for lou gehrig's disease might be as close as your skin
cbs news als cure skin
cbs news, lou gehrig's, skin
cbs skin analysis for lou gehrig
couric als
cure als katie couric
cure for als katie couric
evening news with katie couric - cure for lou gehrig's
goldsmith als
june 28 2009 + cbs news + lou gehrig's disease + cure
katie courac speaks about als cure
katie couric + cure for als
katie couric - cure for als
katie couric 60 minutes als cure
katie couric amyotrophic
katie couric and als cure
katie couric and als lou gerhigs
katie couric announces cure for als
katie couric cbs als cure
katie couric cbs evening news als story 2009
katie couric cure for lou gehrig's disease
katie couric evening news on lou gerhings disease
katie couric lou als
katie couric lou gehrig disease skin cure
katie couric lou gehrig's 2009
katie couric lou gehrig's 2009 this week
katie couric lou gehrig's disease story cbs evening news
katie couric new cure for als
katie couric on the cbs evening news lou gehrig
katie couric report on als cure
katie couric, als cure
kattie curic and als research
lou gehrig's cure "katie couric"
lou gehrig's disease skin
lou gehrig's disease treatment cbs katie couric
michael goldsmith als
michael goldsmith law
michael goldsmith newsweek
on the cbs news tonight, and 60 minutes, a promo said katie kouric would report a cure for lou gehrigs disease
reds july 4 2009 als
sixty minutes story on als on june 28, 2009
the today show "michael goldsmith"
tonight's cbs evening news with katie couric finding a cure for als
60 minutes als cure
als cure couric
katie couric cbs june 29th 2009 als lou gehrigs
the cure to lou gehrig's disease may be as close as your skin."

Sunday, June 28, 2009

And While The Nation's Eyes Are On ALS...

CBS just ran a teaser ad during 60 Minutes.  "The cure to Lou Gehrig's Disease may be as close as your skin."  We are to watch Katie Couric on the CBS Evening News this week to learn more.

Let's hope that it's a slow news week and that Katie Couric spends lots of time talking about skin cells and stem cells and neurons and ALS.

Thanks to 4 ALS it will be cool for the national networks to talk about Lou Gehrig's Disease this week.

Saturday, June 27, 2009

And The NY Daily News Didn't Miss The Story

http://www.nydailynews.com/sports/baseball/yankees/2009/06/27/2009-06-27_70_years_ago_lou_gehrig.html

Lou Gehrig walked unsteadily to the microphone on that sweltering afternoon, a uniform once sewn to fit his hulking frame now hanging loosely, his blue eyes downcast. When baseball's Iron Horse slowly began to speak, the cacophony of noise in the bleachers around then-12-year-old Irv Welzer stopped.

"All of a sudden, the quiet came," recalls Welzer, who bought a 55-cent ticket to history that day. "Out there in the bleachers, in those seats, you had real, real fans. It really hit them. The hush came and we realized what he was saying.


And Now Newsweek Tells The Rest Of The Story

Thanks, Michael Goldsmith!  Thanks, MLB.


Goldsmith has been buoyed by MLB's commitment to his cause. While he may not consider himself "the luckiest man on the face of the earth," he recognizes the enormous potential of this campaign. "ALS robs us of our future," he e-mails. "MLB's decision has produced renewed hope."

Here We Go - It's 4 ALS Week!

The New York Times has kicked off a special week with a wonderful column --


Please read it and then read it again.  It speaks volumes.

Then pass it along to everyone you know.

Thank you, Michael Goldsmith, for giving the press a reason to talk about an important day in baseball and in life.

Seek And Ye Shall Find... Something

It's always interesting to watch the traffic reports for this site.  The search strings that people use to land here always give us some insights into what people are seeking. 

Here are the top five search strings from yesterday (just one day)...
- als registry june investigators
- july 4 2009 als
- als veterans benefits
- ceo brigance brigade
- iplex als

We are all hopeful that this week when people seek information on "als registry june investigators" that they find some answers.

It will be nice to see if we also get a lot of searches seeking information on 4 ALS and Michael Goldsmith and MLB and Lou Gehrig in the coming week!  This should be a huge week for ALS advocacy in the United States.

Friday, June 26, 2009

The Military ALS Connection Takes A Terrible Twist

From The Wausau Daily Herald --


June 26, 2009

After work in Afghanistan, chaplain finds he has Lou Gehrig's disease

By Nicole Strittmater
For the Wausau Daily Herald

STEVENS POINT -- The Rev. Dan Farley has faced danger before; in fact, he's survived it many times.

Farley, who ministers at St. Maximilian Kolbe Catholic Church in the town of Buena Vista, has worked to stop gangs in Los Angeles and counseled soldiers in war-torn Iraq and Afghanistan.

Many of the areas where he worked in Afghanistan were within the most dangerous in the country.

"There were some days when it could have easily been my last day," he said.

But now Farley, 51, is facing a very personal danger and his own mortality after being found to have Lou Gehrig's disease, also known as amyotrophic lateral sclerosis.

It was in Afghanistan earlier this year while serving as a U.S. Army chaplain when he knew something wasn't right with his health.

The weakness in his right leg, which was believed to be caused by a compressed nerve, turned out to be Lou Gehrig's disease. He deployed to Afghanistan in September for a one-year tour, but his diagnosis forced him to come home early...

Thursday, June 25, 2009

This Is An Interesting Question From Twitter About MLB 4 ALS

@alsadvocacy Will the Obama family take in a 4 ALS ballgame on July 4? http://bit.ly/193iFy Nationals? Yankees? Cubbies?

Tuesday, June 23, 2009

Perhaps We Need An Earth-Shattering Ka-Boom Every Time ALS Is Diagnosed

It's lightning awareness week this week. I just heard that on the morning news on the radio and read about it in the morning paper.

Google "lightning awareness" and look at the news links. Wow. It's all over national press an local press.

http://abcnews.go.com/Technology/Health/story?id=7883386&page=1

Lightning strikes more than 400 people each year in the United States,and about
60 of those lead to death, according to the National Weather Service. Most
lightning strikes and fatalities occur during July.
Will the ALS cause be inspired by the lightning folks and get this much publicity for a much more likely threat during ALS awareness month in 2010?

Sometimes We Make ALS Advocacy A Lot Harder Than It Needs To Be

This is the last week of the national CVS campaign to raise funds for ALS research.

http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/06-08-2009/0005040029&EDATE=

On Sunday I ran into a CVS and asked the young cashier if they were still collecting funds for Lou Gehrig's Disease at that store. She gave me a funny look and told me that they were for ALS.

Ding, ding, ding. Advocacy opportunity. We had a cashier who has been offering people a donation "upsell" at the end of every transaction who did not appear to know what ALS is. I asked her if she knew what ALS is. No. She said she didn't have a clue. There was now a line accumulating behind me. It was time to speak loud enough for the gathering crowd to hear. I told her it was Lou Gehrig's Disease, a terrible disease that kills people. I thanked CVS for taking those donations since the disease is a mystery. I put a few dollars down on the counter and the cashier gave me a receipt and a bunch of paper ornaments to put my name on to be displayed in the store. I told her that my name wasn't important (much to the relief of the people in line) but to please put those up and keep people donating.

Every time I go to an ALS activity in a hotel, I always ask the desk clerks or the service staff in the dining room if they know what ALS is. It's amazing how few do, yet often they've been working with an organization and a crowd at a big ALS conference. We miss far too many opportunities to educate the public about ALS. It's simple to explain to people at a hotel desk or the folks serving breakfast what ALS is... and what it does... and why it's a problem.

Sometimes we trip over the easy opportunities as we pursue the difficult ones.

We should never just say, "ALS," in a conversation. It should always be, "ALS - Do you know what that is?"

p.s. Please stop in a CVS this week and donate a few bucks and make sure that the cashier knows what ALS is and that we're grateful for CVS stepping up in a public fight against ALS.

Monday, June 22, 2009

The Strangest Stories Can Raise ALS Awareness

Regardless of your feelings on the crime, this story certainly brings ALS and the demands it requires from the family into the spotlight.

http://www.upi.com/Top_News/2009/06/22/Blacks-supporters-plead-for-his-release/UPI-82271245695861/

Black's supporters plead for his release
Published: June 22, 2009 at 2:37 PM
Jailed former North Carolina House Speaker Jim Black should be moved to a prison closer to home or have his sentence commuted, supporters say.They say Black, 74, should be allowed to tend to his ailing wife, who suffers from amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig's Disease, The Charlotte (N.C.) Observer reported Monday.Interim North Carolina State University Chancellor Jim Woodward and several state legislators are among the 150 people who have written to federal officials on behalf of Black, a Democrat, who has been imprisoned since 2007 in Lewisburg, Pa., after being convicted of corruption, the newspaper said, noting his sentence is set to expire in 2012."There needs to be some compassion and some consideration … where a family member is suffering from ALS," Mayor Lee Myers of Black's hometown of Matthews, N.C., wrote, while Republican state Sen. Bob Rucho, also of Matthews, added that Black's wife "is in need of help and he's not there to help her."Joe Sinsheimer, a consultant whose research helped lead to Black's downfall, told the newspaper, however, "Jim Black wants our compassion today, but all we ever wanted from him was honest government." © 2009 United Press International, Inc. All Rights Reserved.


The more people talk about this one, the more people will think about ALS. Let the debate continue!

How About Some Service Projects to Help PALS and Eradicate ALS?

http://serve.gov

Sunday, June 21, 2009

Today Is Global ALS / MND Awareness Day

Google "amyotrophic" and look for news. Sort by date.

Google "motor neuron disease" and look for news. Sort by date.

How do we fix this problem?


Don't Worry. You Won't Be Twittering Your Life Away.

You might even contribute some new energy to the cause.

There's a list of ALS twitterers at

Be sure to check out the comments there at the end of that blog entry.

This is an interesting use for twitter.  It's refreshing to see formal ALS organizations and individuals interacting spontaneously and adding ideas and energy and mutual support to the sole cause of ridding this earth of ALS.


Friday, June 19, 2009

Thanks, Major League Baseball

MLB has issued more promotion of 4♦ALS

http://mlb.mlb.com/news/article.jsp?ymd=20090618&content_id=5397952&vkey=news_mlb&fext=.jsp&c_id=mlb

This is just huge for ALS awareness! Take a look at the link and some of the wonderful videos of Lou Gehrig.

Happy birthday, Lou.

Lou Gehrig's Disease and Patientslikeme Are Mentioned In The Press...

...in a city with a big pharmaceutical company where many employees read the morning paper before going to work.


Press mentions of ALS are so very important because they make impressions that help dispel the myth of the disease being rare and unlikely and unworthy of investment.  These articles make impressions.  News of a commemoration of Lou Gehrig's farewell at the ballpark makes impressions.  Press mentions of Lou Gehrig's birthday make impressions.

Perhaps for some mysterious reason, a scientist will think about ALS at a big pharmaceutical company today.

Monday, June 15, 2009

The New Hampshire ALS Story Lives On

http://www.nhpr.org/node/25528

Is there a correlation between ALS and the water?

The conversation continues on New Hampshire Public Radio. Conversation is good for the mystery disease that doesn't get much attention.

Recent ALS Studies Make US News and World Report

It's a good day when ALS is featured in a national magazine.

http://health.usnews.com/articles/health/healthday/2009/06/15/finding-raises-hope-for-treating-als.html

With A Dash Of Controversy, ALS / MND Is On The Front Page Of "The World's Greatest Newspaper"

From The Daily Express --

http://www.express.co.uk/posts/view/107408

From UK NEWS

DISEASE AD IS TOO SHOCKING FOR THE PUBLIC

TRAPPED: Motor Neurone Disease claimed the life of Celtic icon Jimmy Johnstone
Sunday June 14, 2009

A PUBLICITY campaign so disturbing it has been banned from television and cinemas is unveiled today to raise awareness of Motor Neurone Disease.

The hard-hitting 90 second advert is only being made available on the Internet because of the way it “vividly illustrates” the effects the fatal illness has on sufferers.

Many of the scenes would not look out of place in a horror movie, but campaigners simply say there is no better way to highlight the impact of the disease.

...

Saturday, June 13, 2009

This Is Powerful Medicine To Wake Up Some ALS Awareness

The website referenced is http://www.sarahsstory.org.uk/
Following is from a communication from the International Alliance of ALS/MND Associations:

We are pleased to inform you about a billboard awareness campaign that the MND Association and MND Scotland are jointly running for two weeks from Monday 15 June. Our MND Awareness week (20-28 June) and Global Awareness Day (21 June) both fall within the promotion period. The campaign is based on the Sarah’s Story awareness advert which I know some of you saw at the International Alliance meeting in Birmingham last year. The copy is written from the perspective of the real “Sarah” who was the body double for the actress and highlights the fact that 5 people a day die from MND in the UK. As you will see from the attached image, the idea is to drive traffic to the Sarah’s Story microsite to view the film. You will also see from the attachment that there are two versions – one for the MND Association and an alternative for MND Scotland, showing our respective website details, logo and charity number. (Just scroll down when you open the attachment and you will come to the Scottish version).

The billboards will be located at 18 London underground stations and 82 sites at mainline rail stations across England, Wales and Scotland.
We are very fortunate that the billboard space has been donated to us free of charge and we have only had to make a small contribution towards printing costs.

A media campaign is planned for both England/Wales and Scotland to support the billboard launch. We are also using a viral email campaign. All staff and volunteers are being asked to email the poster images to five contacts and ask them to visit the Sarah’s Story website. They are urged to pass the email on to five more contacts and in turn to urge their contacts to send it to five more and so on and so on. We are also both exploring the option for placing support advertising in relevant newspapers.

If anyone would like to use this poster concept and adapt it for your country, then please let us know and we’ll be very pleased to help.

With very best wishes,

Craig Stockton and Donna Cresswell
CEO Director of Communications
MND Scotland MND Association
Tel: (+ 44) 141 945 1077 Tel: (+ 44) 1604 611837




Who Would Have Thought That Willand Pond Would Be The One?

There have been many suspected geographic and vocational ALS clusters -- Guam, Kennedy Space Center, Massachusetts, San Antonio... football and soccer players, golfers, firefighters,...  There has been one certain vocational cluster -- U.S. military personnel.

Who would have thought that concern over a pond in New Hampshire would have been the one to stick in America's attention and get some action?


Suspected clusters magnify the need for us to have a comprehensive and statistically sound registry of all cases of ALS in the United States.  Are these suspicious groupings of cases significant?  If we started counting cases in an orderly manner, would we find a different baseline of ALS prevalence than we assume today?  Do we have a lot of questions that need to be answered?

Perhaps a pond in New Hampshire will finally get the CDC moving with some speed and purpose to at least count the noses and collect the dots so that scientists might connect those dots.  The ALS Registry Act was passed last year, yet today, we're still waiting for a registry. 

Thursday, June 11, 2009

These Chicagoans Understand ALS Advocacy

Following letter was published in the Chicago Sun Times, and the Executive Director of Les Turner's knew how to amplify the message. Important information was spread in a great and big American city! Here's hoping that the Obamas read their home-town paper today.

http://www.suntimes.com/news/commentary/letters/1617739,CST-EDT-vox11.article

June 11, 2009
How much is a human life worth? According to the United States government, mine is not valued very highly.
In 2003, I began experiencing symptoms later diagnosed as amyotrophic lateral sclerosis, widely known as Lou Gehrig's disease. ALS is a progressive neuromuscular disorder that weakens and destroys motor neurons, causing paralysis and death. There is no cure or effective treatment. In the 150 years that we have known about ALS, science has unveiled few answers as to its cause or progression.
About 35,000 people in the U.S. live with ALS at any given time, including an alarming number of recent veterans. As ALS is relatively rare, I was disappointed but not surprised to find pharmaceutical companies uninterested in funding research, but was shocked how government supports ALS research compared with other conditions.
I found the National Institutes of Health spends billions of dollars for research -- the vast majority targeting preventable, treatable and non-life threatening diseases. The sample below provides perspective on how much money the NIH was willing to spend in 2008 to prevent each death from these diseases: HIV/AIDS, $198,263; substance abuse, $162,353; sexually transmitted diseases, $40,833; ALS, $7,167.
I shared my statistical analysis with U.S. Rep. Bill Foster (D-Ill.). He was impressed by the manner in which these statistics highlight inequities in NIH grant allocations and believes hard statistics help legislators make good decisions about how and where to direct federal funding.
Don't misunderstand me. The targets of NIH research dollars are deserving. However, I believe government's main role in health research should focus on basic research and on areas deemed unprofitable by private industry.
July 4 marks the 70th anniversary of Lou Gehrig's famous "Luckiest Man" speech, and many ALS awareness activities are planned to commemorate this occasion. Please help raise awareness of ALS by sharing this information with elected federal officials and the secretary of Health and Human Services.
Steven Heronemus, Batavia



_____

wendy abrams wrote:
On behalf of all people with ALS both past and present, I want to thank Steve Heronemus for putting the facts before the public eye. ALS was discovered in 1869 by Charcot, long before Lou Gehrig, and still today ALS research is below the radar.Steve knows only to well, the difficulties of living with ALS and we appreciate his personal help both on the national and local fronts, as Steve recently went to Sprinfield with us to talk to the General Assembly members about the need for outreach services for people with ALS.The Les Turner ALS Foundation in Chicago is the local leader in both ALS Research and patient care, partnering with Northwestern on both fronts, but ALS researchers need more funds from the NIH to truly attack this disease.5,600 hundred American's will be diagnosed in 2009 and the same number will die, 35,000 American's live with ALS every year- this has to stop. Contact your Senators now and encourage them as they prepare the NIH Budget, to increase funding for ALS research before more people are diagnosed or die.
Wendy Abrams
Executive Director
Les Turner ALS Foundation

A Little Controversy Isn't All Bad...

...especially when it makes people squirm about ALS.

http://thirdsector.co.uk/news/Article/912474/Motor-Neurone-Disease-Association-advert-cleared-complaints/

Odd that people would be offended by an ad that they find distressing and offensive and not be distressed and offended that the disease has gone on for so long.

Let the controversy and conversations continue. Let more people view and discuss whether it's distressing and offensive.

Remember How Exciting It Was To Pick Up The Prints At The Fotomat Booth?

Following is an email communication in its entirety from the ALS Association:

We are pleased to share with you the following story which captures the empowering highlights from last month's National ALS Advocacy Day and Public Policy Conference. The entire story also can be found here.

Photographs taken during the conference that show the emotion and excitement experienced by attendees are available for viewing and purchase via the Advocacy Day page of The ALS Association website at
www.alsa.org/policy/alsday.cfm.

Save the Date
Thank you to everyone for helping to make the 2009 National ALS Advocacy Day and Public Policy Conference such a tremendous success! We look forward to another empowering Conference next year, May 9-11, 2010.

In the meantime, please encourage everyone you know to join our year-round advocacy efforts by signing-up to become an ALS Advocate via the Advocacy Action Center of our website,
http://capwiz.com/alsa/mlm/signup/. As an ALS Advocate, you can make a difference with the click of a mouse!
___________

Advocacy Delivers the Roadmap to a Cure
2009 National ALS Advocacy Day and Public Policy Conference

"I truly didn't grasp what a powerful experience this was until I attended in person," said Stephanie Steele, after attending her first national ALS Advocacy Day and Public Policy Conference, which was held in the nation's capital in May. Stephanie came to Washington to advocate with her father, Daryl Thorson of Sioux Falls South Dakota, who has ALS and is a veteran attendee of the Advocacy Conference. Upon arrival in Washington, she quickly learned what Daryl experienced after his first trip to the conference:

The power of the conference is found in the people attending and the knowledge that
families impacted by ALS are not alone in the fight - that they can make a difference.

In fact, advocates from across the country representing the entire ALS community - people with ALS, families, caregivers, researchers and clinicians - came together for the 2009 conference to share their hopes and experiences and to join The ALS Association in creating the roadmap that will lead to a treatment and cure.

The ALS Association's Public Policy Conference is part of a year-round strategic effort to improve patient care, advance research and empower people with ALS through advocacy. By leveraging the single largest source of ALS research funding, the federal government, the Advocacy Conference is making a difference in more ways than one. For example, unlike virtually anything else experienced by families with ALS, advocacy presents people like Stephanie and Daryl with the opportunity to play an active role in the fight against the disease - to fight back against ALS. Indeed, the accomplishments that resulted from last year's conference left the government poised to spend more than $1 BILLION on ALS over the next 10 years.

Armed with a story to tell and a passion to make a difference, Stephanie and the hundreds of ALS Advocates who attended this year's conference flooded the Halls of Congress and met with nearly 400 Senators and Representatives. The goals:
To continue funding for the national ALS Registry, which may become the single largest ALS research project ever created; and
To double funding for the ALS Research Program (ALSRP) at the Department of Defense (DOD), a program whose sole mission is to develop a treatment for ALS.
It is clear that the meetings made an impact as 33 Senators signed a letter calling on the Senate to increase funding for the ALSRP to $10 million. This is the largest number of Senators who have ever signed onto our DOD funding letter, which last year led Congress to enact our request and provide $5 million for the program. The support generated this year - in just a matter of days - was greater than similar letters supporting other disease research. Why? Because advocates told the ALS story, put a face on the disease, and made a policy issue personal. After all, Members of Congress can't forget shaking the hand of a person with ALS who no longer can return the grip. As Stephanie said, "I believe the personal visits make it impossible for our message to get lost in the shuffle."

The sense of empowerment was not only felt walking the Halls of Congress. It was present on each day of the conference - whether during the conference's opening session where advocates from across the country announced their presence in Washington, the "Prep for the Hill" session or even the Mother's Day BBQ where attendees had the opportunity to meet hundreds of others who share the same experiences and the same hopes in the journey toward a treatment.

The Advocacy Conference included other empowering sessions in addition to Advocacy Day on the Hill. To read the entire story about the 2009 Advocacy Conference, including: the research and policy breakout sessions; the celebrities who joined us in Washington to fight ALS, like former Major League Baseball All-Star pitcher Curt Schilling; the 2009 candlelight vigil; and a moving wreath laying ceremony held at the Tomb of the Unknowns at Arlington National Cemetery, please click on the following link: http://capwiz.com/alsa/attachments/5_Advocacy_Delivers_the_Roadmap_to_a_Cure__Full_Story_.pd
f.

Join Us in 2010!

The ALS Association encourages the entire ALS community to join us for next year's conference, which takes place May 9-11, 2010. And please participate in The Association's year round advocacy efforts by signing-up to become an ALS Advocate TODAY at
www.alsa.org/policy/involved.cfm.
In the meantime, we invite you to share memories and view photos taken during the conference at
www.alsa.org/policy/alsday.cfm.

Wednesday, June 10, 2009

Newsweek Publishes An Interesting Perspective on Research And The NIH Roadmap And Leadership

From Sharon Begley of Newsweek,

From Bench To Bedside
Academia slows the search for cures.
Published Jun 5, 2009 Updated: 2:05 p.m. ET Jun 5, 2009
From the magazine issue dated Jun 15, 2009


http://www.newsweek.com/id/200599

MDA Publishes First Advocacy Newsletter

Below is the text... it looks a lot better in it's html email form...


MDA Champions:
Meet Angela Wrigglesworth
Angela Wrigglesworth
Angela Wrigglesworth of Houston is a member of MDA's National Task Force on Public Awareness, and is a third grade teacher. Named Ms. Wheelchair Texas in 2004, she also currently serves as the Executive Director of the Ms. Wheelchair Texas Foundation. She was diagnosed with spinal muscular atrophy as an infant.
Read the full article
Senator Johnny Isakson (R-GA)
Johnny Isakson represents Georgia in the U.S. Senate.
Senator Isakson has twice played a pivotal role in introducing and supporting legislation that is important to the MDA community.
In the previous Congress, he and Senator Amy Klobuchar (D-MN) co-sponsored the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008. Recently, he teamed with Senator Debbie Stabenow (D-MI) to co-sponsor the SMA Treatment Acceleration Act of 2009 which was introduced on May 26.
Read the full article
“How did you spend your summer vacation?”Youth Leadership Forums Empower Young Advocates
When it comes to advocacy, “the key is motivation,” says Chad McCruden, a 36-year-old disability advocate with Friedreich's ataxia who lives in Baltimore.
When a child has a disability, the parents are the advocates. As that child matures, the advocate role shifts, and people like McCruden work to ensure that these individuals become their own advocates through programs like the Youth Leadership Forum (YLF).
YLF was started as a committee in California during the Clinton administration. The focus was to create a “training camp” to teach high school-aged youth with disabilities about leadership and advocacy. The successful pilot program developed a curriculum and almost all 50states have since adopted the YLF program.
Read the full article

June - July 2009
Finding Our Voice
Welcome to the inaugural edition of the bimonthly newsletter of MDA's National Advocacy Office. In this issue you'll read about innovative programs that help young people learn to advocate for themselves and issues they care about, and meet others who have found success and fulfillment in letting their voices be heard. This issue also highlights how Georgia families who reached out to local elected officials now have an MDA champion in Congress – Senator Johnny Isakson – who is a key supporter of legislation that is vital to people affected by neuromuscular diseases. We welcome your comments and feedback at
advocacy@mdausa.org
Summer Program Gives Taste of College Life, Plus Crash Course on Self-Advocacy
Liam Cornwall is still more than a year away from attending college, but thanks to an innovative summer program, he already knows what it will be like to live, study and attend class at Virginia Tech University in Blacksburg, Va.
Read the full article
Notebook
SMA Act Introduced in Congress New Advocacy Tools on MDA's Web SiteMyMDA: The New Place to Be OnlineALS Awareness in July
Take 5!
Watch your “in” box and the July edition of Quest for details on the MDA Fly Out happening this summer!
Voice Box
“I am in awe of how many amazingly wonderful people make up our MDA family.”
-Frank Lombardi, a Virginia resident who hasCharcot-Marie-Tooth

ALSA Publishes Information From ALS Advocacy Conference

Following is a link to newly published information from ALSA on the proceedings of the May ALS advocacy conference in Washington:

http://www.alsa.org/news/article.cfm?id=1487

We hope that the information will expand and continue to fill our enquiring minds. What is the ALS share of the NIH budget... of the NINDS budget? When will we hear the results of the June ALS Registry investigators' meeting? Will Dr. Clive Svendsen's work go with him in his move to California that was announced last week, or will it stay in Wisconsin.

Engaged advocates thirst for facts on results. We appreciate this update, especially for those who could not attend the conference. We need a GPS to tell us exactly where we are on the road the the cure ;-)


The Plot Thickens

Perhaps we need a good, old-fashioned New England mystery writer like Jessica Fletcher to unravel this one.


Let's see... highly increased incidence of ALS but it's not from bacteria in the lake.  So what is it?  Just a fluke?  The air?  The water?  A rare plant?  Something used to build the homes?  The local produce?  The milk?  The local coffee shop?  Something on the newspapers?  Incense at the church?  School bus exhaust?  Something from the dry cleaning?  The carpet cleaners?  Annoying local radio commentators?  Something about the grocery store?  The local eggs?  The soil?  The fish in the lake?  Insects?  Something that the dog groomer uses? 

Suspected clusters are newsworthy.  We must not let them fade from the public view.  They need to be pursued, and they scream for registry data to determine their significance.

In the meantime, does anybody want to buy a lake lot in Enfield, NH?

Tuesday, June 9, 2009

Curt Schilling Still Has What It Takes

And he knows how to use it. See Tuesday pics. The man pitched all day for ALS on Capitol Hill.

http://www.photoreflect.com/pr3/thumbpage.aspx?e=4783223

Thanks, Curt.

Monday, June 8, 2009

Let's Go Shopping At CVS!

CVS is having its annual ALS fundraiser.

http://www.prnewswire.com/mnr/CVS/38728/

In our community, most CVS stores have lighted signboards, and when they light up the lights about ALS, it builds priceless awareness.

Talk to your friends and neighbors. Tell the Little League teams. Tell your coworkers. It's time to go to CVS and support the fight against ALS. Please thank the store manager while you're there (and then ask him or her to put ALS on the lighted signboard ;-) ).

ALS Registry Act - Do We Have Action to Report?

http://www.govtrack.us/congress/billtext.xpd?bill=s110-1382

Please take a moment and read the ALS Registry Act text at the link above.

At the ALS Advocacy Conference in May, Dr. Bruijn reported that the pilot registry investigators would be meeting in June to report findings.

Let's hope that there is news to report soon. People are literally dying to get a comprehensive registry moving. June is a long month when you are waiting for news.

Also, let's hope that the CDC has a public report soon on who has the no more than 27 seats on the ALS Registry Advisory Committee.

Sunday, June 7, 2009

Curtain Up! Light The Lights! We've Got Nothing To Hit But The Heights!

Tonight is the night for the Tony Awards.


In an interesting alignment of the stars, we have Angela Lansbury, national spokesperson for the ALS Association, and Jane Fonda, a lighting rod personality who plays a woman with ALS in her play, both nominated.

Tonight it's likely that the nation's eyes will be on one or both of them.

Will either have the chutzpah to go off script and mention the disease that gets no attention?  Or better yet, did anybody work with them to get ALS "on script" for tonight?

Let's hope there's a reason for hope that ALS will come out of the shadows and into the lights tonight.

Is This A Cluster? Is There A Trigger? Why Don't We Have A Registry Yet?

http://www.unionleader.com/article.aspx?headline=NH+lake+linked+to+ALS+cases&articleId=9c46849c-5456-4748-8f16-823c9263aa43

Friday, June 5, 2009

Collaborate, Collaborate, Dance To The Music!

Prize4Life has introduced a website that invites collaboration and will certainly attract some attention if it gains critical mass and energy among those interested in ALS research --

http://sev.prnewswire.com/medical-pharmaceuticals/20090604/DC2781804062009-1.html

http://www.researchals.org/

Here's hoping it picks up some wind and doesn't turn into yet another of the many ALS websites floundering at sea.

Thursday, June 4, 2009

Which 33 Signed? Which 67 Didn't?

The following communication came from the ALS Association Washington, DC, office:


Senators Join Fight Against ALS;
DOD Requests ALS Research Proposals

Thank you to everyone who told the ALS story in their meetings in Washington DC in May and to those who participated in our Virtual Advocacy Day online. We are excited to report that your outreach has produced results...

Thirty-three Senators signed-on to the "Casey-Snowe" Dear Colleague letter and have urged the Appropriations Committee to increase funding for the ALS Research Program (ALSRP) at the Department of Defense (DOD)

This is the largest ever number of Senators who have signed-on to our DOD Dear Colleague, and is nearly 15 more than in 2008. As you know, the support we generated last year resulted in Congress providing $5 million for the program. The record amount of support we received will help us realize the goal of doubling funding for the ALSRP to $10 million in Fiscal Year 2010.

The fact that 33 Senators signed-on to the Dear Colleague - within just a few days of your meetings and emails - demonstrates the power of your advocacy. By contrast, similar Dear Colleague letters for other disease research programs did not generate nearly as much support. And outreach to support those other letters took place over much longer periods of time, not one week!

The Advocacy Department already has contacted each ALS Association Chapter to let them know whether their Senators signed-on to the Dear Colleague letter. If you would like to know whether your Senators signed-on, please contact us at
advocacy@alsa-national.org.

A copy of the Dear Colleague letter that was sent to the Appropriations Committee is available by clicking
here.

$5 Million in Funding Available for 2009: DOD Requests ALS Research Proposals

As we continue to advocate for increased funding for the ALSRP in 2010, we are pleased to announce that the DOD is now accepting applications for research proposals that will be funded using the $5 million we secured for the program last year. This funding will only be available to projects that are specifically focused on developing new treatments for ALS.

The deadlines for submitting applications are:

Pre-Application Deadline: July 15, 2009
Proposal Submission Deadline: October 15, 2009

Additional details, including the DOD's Program Announcement and Application Instructions, are available here:
http://cdmrp.army.mil/funding/alsrp.htm. We encourage you to share this information with researchers in your community so that they can take advantage of this funding opportunity.

Recruit Others to Become ALS Advocates!

We will continue to let you know when your outreach can make the most difference on DOD research and other critical issues, so please keep an eye out for our Action Alerts as the legislative process continues. In the meantime, we urge you to recruit more people to join our fight by becoming ALS Advocates today. Your family, friends and colleagues can help us make a difference by signing-up on our website here:
http://capwiz.com/alsa/mlm/signup/.

If you have any questions about this update or would like more information, please contact the Advocacy Department at
advocacy@alsa-national.org or 1-877-444-ALSA.

Thank you!

Piece by Piece Mannequins Continue To Get Attention

From the ALSA Florida Chapter Facebook page...

The ALS Association Florida Chapter just found out we received 5 Telly Awards for the Piece by Piece commercial. These are like the Oscars of television commercials.

Global ALS / MND Day - June 21

Following is from an email communication from the International Alliance of ALS/MND Associations:

Dear Member,

I was so fortunate to meet Dalai Lama when he spoke in Iceland few days ago. He was participating in a meeting with all kind of religious groups and all of them spoke of peace and hope.

This man should be our role model for caring and peace. “Peace starts within one self, the future is something we do not know anything about, so there is no use in worrying about it, hope is that every man is doing his/her best at this moment. Here and now“

Our international ALS/MND day is 21. June - Global Day is getting closer and we are very much forward looking to that day. I encourage us all to use the day to raise awareness about this damn disease. We in Iceland will not collect money this day (we do it every day but not this day). We will use the day to “pay back” to our supporters and enjoy life with them. The following is on: Wheelchair rally, wheelchair dancing, outdoor concert and we will show for the first time a documentary film about Evald Krog and his relation with Iceland. Partnership program of the Alliance started this. A very busy and lively day.

If you do not have the ability to do anything big, just use the day to talk about ALS/MND to as many as you can.

Most important of all: Enjoy the moment in peace and hope.

See you in Berlin in December.

Best wishes


Gudjon Sigurdsson
Chairman
International Alliance of ALS/MND Associations


Donna Corbett
International Alliance Co-ordinator

International Alliance of ALS/MND Associations
United in the worldwide fight against ALS/MND

Tel: +44 1604 611821
Fax: +44 1604 624726

Email:
alliance@alsmndalliance.org

International Alliance Annual Meeting
5/6 December 2009
Allied Professionals' Forum
7 December 2009
International Symposium
8-10 December 2009
Berlin, Germany

Wednesday, June 3, 2009

CNN Spotlights The Difference Between "Promising" and Deliverable... And The Desperation of Those Caught In The Gap

http://edition.cnn.com/2009/HEALTH/06/02/stem.cell.therapy/

CNN asked Dr. Lucie Bruijn, the senior vice president for research and development for the ALS Association, whether stem cells offer meaningful treatment for ALS."No, it's definitely not true," she said. "Certainly you hope that the answer from an ALS clinician who is knowledgeable ... [will be], 'There are things that are promising but we don't have anything to offer you now.' "

That statement is at odds with promises posted on a relatively new Web site run by an 80-year-old Florida doctor named Burton Feinerman, who says he's been conducting stem cell therapy for three years. His site, Stem Cell Regen Med, at stemcellregenmed.com, says it can offer treatment for a long list of life-threatening diseases, including ALS, Parkinson's, Alzheimer's, cancer, brain damage and lung illnesses.


Let's hope that the CNN expose protects those caught in the gap. A mysterious, uncurable, terminal disease like ALS sets a pretty low "first-do-no-harm" bar for an 80-year-old, self-proclaimed cosmetic dermatologist who does not seem to be board certified in any specialty.

Tuesday, June 2, 2009

Today We Remember Lou Gehrig

On this date in 1941, a 37-year-old Lou Gehrig died.

We should be making a big splash on these dates in history that give us such meaningful reference points to understand ALS.

Silence is not golden when it comes to ALS advocacy.