Tuesday, June 30, 2009
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.
Monday, June 29, 2009
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.
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.
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on the cbs news tonight, and 60 minutes, a promo said katie kouric would report a cure for lou gehrigs disease
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the cure to lou gehrig's disease may be as close as your skin."
Sunday, June 28, 2009
Saturday, June 27, 2009
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.
We are all hopeful that this week when people seek information on "als registry june investigators" that they find some answers.- als registry june investigators- july 4 2009 als- als veterans benefits- ceo brigance brigade- iplex als
Friday, June 26, 2009
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
Tuesday, June 23, 2009
Google "lightning awareness" and look at the news links. Wow. It's all over national press an local press.
Lightning strikes more than 400 people each year in the United States,and aboutWill 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?
60 of those lead to death, according to the National Weather Service. Most
lightning strikes and fatalities occur during July.
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
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!
Sunday, June 21, 2009
Friday, June 19, 2009
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.
Thursday, June 18, 2009
Tuesday, June 16, 2009
Monday, June 15, 2009
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.
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
Following is from a communication from the International Alliance of ALS/MND Associations:
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
Thursday, June 11, 2009
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.
Les Turner ALS Foundation
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.
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_.pdf.
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
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
Meet 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 email@example.com
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
• SMA Act Introduced in Congress• New Advocacy Tools on MDA's Web Site• MyMDA: The New Place to Be Online• ALS Awareness in July
Watch your “in” box and the July edition of Quest for details on the MDA Fly Out happening this summer!
“I am in awe of how many amazingly wonderful people make up our MDA family.”
-Frank Lombardi, a Virginia resident who hasCharcot-Marie-Tooth
Tuesday, June 9, 2009
Monday, June 8, 2009
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 ;-) ).
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
Friday, June 5, 2009
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
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 firstname.lastname@example.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 email@example.com or 1-877-444-ALSA.
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.
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.
International Alliance of ALS/MND Associations
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
International Alliance Annual Meeting
5/6 December 2009
Allied Professionals' Forum
7 December 2009
8-10 December 2009
Wednesday, June 3, 2009
CNN Spotlights The Difference Between "Promising" and Deliverable... And The Desperation of Those Caught In The Gap
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
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.