4ALS Awareness

INFORMATION FOR ALS PATIENTS AND CAREGIVERS

2009-07-28T23:39:02Z

As Director of Therapeutics Investigation at ALS TDI with extensive credentials in academics and industry, part of my job is to be aware of what is happening around the world in working towards understanding this devastating disease - why it initiates and progresses and what are the prospects for drugs that will slow and stop the loss. Researchers in our labs and around the world are making real progress towards this immediate goal.

This progress brings biologists and other researchers like me to recognize that I and others working in this field have come full circle to nearly realizing the dreams that motivated us to become researchers in the first place: the drive to make a difference and to touch lives with new therapies. To get an idea of what we at ALS TDI are excited about, check out what Steve Perrin, who leads our research institute, has to say on our program's progress and, in particular, on a potential therapeutic that we are particularly bullish on (click here to watch this video).

I have two messages for all the PALS and CALS and family and friends: first, Hold Fast, the drugs are out there, somewhere on a bench or in an animal study that are going to make a difference. Our lab alone has some 40 unique projects in evaluation and we have a very ambitious program aimed at understanding the disease and to derive biomarkers that can enable better and faster clinical evaluation of prospective drugs. And finally: Get Involved - we and other organizations welcome new partners as we change forever the prospects and prognosis associated with this long neglected, unmet medical need. If you are able, consider making a donation in support of ALS research.

Thank you,

John McCarty, Ph.D.

Director Therapeutic Investigations - ALS TDI

EMAIL ME - jmccarty@als.net

LEARN MORE ABOUT RESEARCH AT - http://www.als.net

P.S. If you or someone you know has a question about Lou Gehrig's disease please post a comment below on this blog or take advantage of the world's largest online discussion board by posting your question on the ALS Forum (click here). With most members ALS Patients and Caregivers, the ALS Forum is a unique place where you can ask questions and get answers from people that know what ALS means for patients and family. Also, you can learn more about ALS Research during our monthly webinars: times and dates of those online discussions and presentations are available by clicking here

LIVING WITH ALS: TOUGH QUESTIONS REAL ANSWERS

2009-07-08T18:25:05Z

Hello, my name is Noah benShea, and I am the National Laureate for The ALS Association. I am honored to be involved in this historic effort to bring greater awareness to Lou Gehrig's Disease and the need to fund critical research to bring new therapies and hopefully a cure to those with ALS. Like any other kid who grew up around baseball, I never dreamt my life would be entwined with the life of Lou Gehrig. But then, if ALS teaches us anything, it is that life is not a dream.

In 1990, I lost my father to ALS. To this day I still have more anger than peace, more questions than answers. Nevertheless, over time I have learned a few things about coping with ALS even though most of the education came from feeling beat up, watching my mother get pummeled by events, and simply witnessing my dad's daily honored courage in the face of fear and fate. The few words you are about to read aren't intended to be the final word on the question at hand but are the best I can do in trying to offer you a few words, when the truth is that words generally fail in life when you need them most. And it is with the humility of knowing this that I invite you to read on because I believe my heart is in the right place - right next to you in the corner where you feel cornered. At least that is where I have attempted to park my best intentions.

How do I, tell my family, particularly my children, that I've got ALS?

It always seems to me that the toughest place to begin with any of the tough issues in life is with ourselves. So perhaps before we get around to trying to tell anyone else what has got to be devastating news, the place to begin is by having a conversation with ourselves. Before we think of breaking the news to anyone else, I think it serves us to make sure we are being straight with ourselves. The truth starts at home.

This doesn't mean we don't say anything until we are past anger, denial or the like, but it does mean we are being straight with ourselves about what we're feeling facing this monster.

From being honest with ourselves, we can begin to find our way with others. If we can be self-loving in the face of the facts, then we have a much better chance of being other-loving when we share the facts with others.

And while we can't presume how others will take the news you share with them, neither can we presume where the news is going to take you - and living with this uncertainty is certainly the first fact that needs a face to face. Suddenly, for both patient and family, what we have to face is that all the previous presumptions we had about life were just that, and for most of us this is the hard news of the human condition as much as the diagnosis.

In no small way, facing ALS forces us to face what it means to be a vulnerable human being. And the usual tactical avoidances of having plans, being busy or being young are all washed away leaving us nose to nose with the dragon whether that dragon is ALS or simply facing the fact we're all growing older and soon will get yanked from the stage of our day to day dramas, comedies and triumphs.

Still, at the end of the day, what do you say to your family and your children? Tell them that you love them. And you need their love. And when things get tough for them it will be tougher yet for you. And what will hold it all together is the knowledge that though we will be pulled apart this experience can also pull us together.

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Posted by Noah ben Shea, National Laureate, The ALS Association

ALS Community and Baseball Fans Unite 4ALS Awareness! Live ALS Reaeach Update to be Webcast on July 16th

2009-07-08T18:11:13Z

Hello there again baseball fans,

We want to extend an enormous THANK YOU to everyone that is making this July 4^th one of the most important days in the history of this disease. MLB has made possible an amazing event this weekend and all of the clubs have been remarkable in involving ALS patients and their families through a variety of ways at the parks this weekend. All of us in the lab today believe that ALS can and will be stopped. The support provided through this weekend's events will enable us to move faster in offering real options for those living with Lou Gehrig's disease.

I am also writing today to share some very exciting news - we have successfully reached our goal of 100 BBQ For ALS Awareness events which took place when the 4ALS Awareness initiative culminated this July 4^th. The events were spread out over 30 different states in the United States and Canada. To learn more or see a Google map of where the events took place and to donate in support of this effort to ALS research, visit www.als.net/mlb4als

During a live webcast this July 16^th at 6:30PM, ALS TDI will provide the latest information on ALS TDI's research from the first half of 2009, introduce the new online Drug Development Pipeline interface and preview planned studies and experimental approach for the second half of the year. Dr. John McCarty will join me in answering your questions and in providing the latest information on progress being made at ALS TDI. Dr. McCarty will also have a special report on impressions from reports and presentations made during the International Society for Stem Cell Research Conference taking place in Barcelona, Spain this month. This event is offered free of charge and registration takes only a moment via this link: http://www.als.net/ResearchUpdateCall

Sincerely,

Steve

Steven Perrin, Ph.D.

Chief Executive Officer & Chief Scientific Officer

ALS Therapy Development Institute

Click Here to Donate to ALS TDI: (www.als.net/mlb4als)

Gene mutations linked to ALS open up new avenues for research.

2009-07-02T17:47:48Z

This is an exciting time for researchers in the ALS field and I wanted to share with you some encouraging developments in our scientific progress as we commemorate the 70^th anniversary of Lou Gehrig's farewell speech.

The ALS Association has played an integral role in establishing an international consortium focused on the identification of gene mutations linked to ALS. Significant advances in ALS research have resulted from the discovery of the first gene mutations linked to ALS in an enzyme within cells known as SOD1. With the identification of additional genes we hope to understand more about how these mutations contribute to both familial and sporadic ALS, which will enable the development of meaningful treatments to extend the lives of those battling this disease.

I am excited to tell you that our understanding of ALS was significantly accelerated in the last year with the groundbreaking discovery of two new genes, TDP-43 and ALS6, both with similar structure and function. These genes are involved in cell processing, complex methods in which messages are translated for proper functioning of cells. Abnormalities in cell processing have been implicated in other motor neuron diseases such as spinal muscular atrophy (SMA), a childhood motor neuron disease, suggesting that there may be common mechanisms involved in cell death in other neurodegenerative diseases. These recent findings open up a whole new avenue of research, bringing new players to the field to develop model systems and determine both the normal and altered functions of these genes in ALS. As we learn more about these genes and develop model systems with these gene mutations, we can begin to test potential drugs.

Through The ALS Association's TREAT ALS® program, we will fund vital drug development and clinical trial efforts and move potential treatments from bench to bedside and into the hands of people battling ALS. It is our quest and our goal to find those treatments that can slow or stop this disease, and to do so as quickly as possible.

Posted by Lucie Bruijn, Ph.D., Senior Vice President of Research and Development, The ALS Association

>> Donate Now

Focus on ALS on July 4 and Always

2009-06-29T16:43:15Z

Nineteen years ago I was exposed to Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease. I am excited beyond belief that on July 4, 2009, Major League Baseball will finally honor a man who gave so much, all really, of himself to the game and its fans.

I remember the day I met Dick Bergeron like it was yesterday. I was with the Philadelphia Phillies at the time, and we had a meeting one day with a representative from The ALS Association to coordinate the annual Phillies Festival. I was in awe of the courage that Dick showed in the face of his disease, and so my wife Shonda and I found something to commit ourselves to: the ALS cause.

Everything happens for a reason, the Lord does work in mysterious ways. I had always been bothered by the fact that ALS was not even on Major League Baseball's radar as something to work to fight or raise awareness. Little had been done in the past. But it appears to me now that that is perfectly ok and is the best possible thing that could have happened.

How is that possible you might ask?

Major League Baseball is sitting in front of more people, being seen, heard and watched by more pairs of eyes than at any time in its history. On July 4^th of this year more people will receive an introduction to ALS, what it is, what it does and what it means, than on any day in the history of mankind.

For that we have Commissioner Bud Selig to thank. His eagerness to participate in the 70^th anniversary of one of the five most famous speeches of all time is something people with ALS will be forever grateful.

MLB has the power to change the world when focused and delivering the right message, and I am proud to see that message being presented to the world this year.

People will learn of a man who truly was one of the few athletes in our lifetimes warranting the label Hero, Courageous and Warrior. He battled this fatal illness for at least a full year while continuing to play baseball. If that doesn't resonate with you, I beg you to at least understand what ALS does to the human body, and mind. If you do that much you will grasp some semblance of understanding of why this man should and will be celebrated.

But most important, Lou's legacy will live on in all of you who see it in your hearts to contribute to the research that we need to find a cure for this horrific disease and to make the lives of people with ALS just a little bit better until we find that cure.

God Bless

Curt Schilling

Read more of Curt Schilling's blog at www.38pitches.com and Donate Now to The ALS Association

The Gehrig Legacy

2009-06-29T16:28:34Z

In the 1920s and 30s, baseball legend Lou Gehrig was an unstoppable powerhouse, filling stadiums and shattering records. It wasn't until 1938 that Gehrig's batting average dipped below .300 for the first time in over a decade. He lost his battle with ALS in 1941. In the early 1950s, his widow, Eleanor, heard that a new organization called the Muscular Dystrophy Association had been formed to combat neuromuscular diseases. "I saw that here was the answer to my personal need -- people whose thirst for action was as deep as my own. I immediately offered my services" she said years later. Since the 1950s when MDA first added ALS to its program and Eleanor served as the campaign chairperson, the Association has funded over $250 million in ALS research and services. Although "ALS" may not be in our name, it's certainly in our hearts and in our commitment to research and services for those with ALS. Over the coming days, I look forward to telling you more about our groundbreaking new initiative to develop drugs for ALS and other diseases. We made a commitment to Eleanor Gehrig that we intend to honor.

Visit http://www.augiesquest.org/ for more information.

--Posted by Sharon Hesterlee

My Quest for a Cure

2009-06-19T04:10:24Z

I was diagnosed with ALS in March of 2005. ALS destroys the nerve cells controlling muscles, ultimately causing complete paralysis while leaving mental function intact. Survival is typically two to five years after diagnosis, and no cure exists. Prior to my diagnosis, I had spent my life teaching people the importance of physical fitness and living an active lifestyle. Today, I am unable to walk on my own and can communicate only with the help of a sophisticated, eye-controlled computer. Without the support of my wife, children and friends, I would not have the strength to continue to fight.

The Muscular Dystrophy Association (MDA) is the world's largest provider of funds for ALS researchers and we have partnered with them to organize the most comprehensive research fundraising effort ever - Augie's Quest located at http://www.augiesquest.com/ and have raised more than $19 million so far. I believe that ALS can be stopped, and you can help. Over the next few weeks, I will be posting my thoughts in here on research, communication and the impact that this disease has had on my family. One thing is certain, with the support of the Commissioner's Office, every MLB team, and every on-field personnel member, this July 4th could mark a turning point in the fight against ALS. But ultimately, it is up to all of us to become involved and make a future where ALS can be stopped a reality.

-Posted by Augie Nieto

To Learn More about Augie's Quest, the MDA and to Donate, visit http://www.augiesquest.org/MLB4ALS/

Take a Virtual Tour of the World's Largest ALS Research Center

2009-06-12T15:57:33Z

Hello baseball fans, and thank you for your support of the 4ALS Awareness campaign! Over the next few weeks, I will be posting information here about the work being done at ALS TDI toward the development of treatments to slow, stop and ultimately end ALS. First in the way of introduction, ALS TDI is the world's largest ALS research center and the first ever non-profit biotechnology company. There is only one thing that our team of 30 professional scientists focus on - delivering effective treatments to ALS patients as soon as possible. We believe that this can and will be done. You can take a virtual tour of our research center online at www.als.net/research/vlt

I also would like to let you know about a unique program of ours taking place this July 4^th in conjunction with the 4ALS efforts in all 15 of the ballparks that day - it is called "BBQ For ALS Awareness" and today we have 82 different BBQs signed up between 28 states (as well as Canada and Australia!). These grassroots fundraising and awareness events epitomize the ownership that the ALS community has taken over solving the ALS crisis. Thank you to everyone that has registered thus far and for all of the volunteers that will be in the ballparks on the 4^th handing out information about ALS. You can learn more about the BBQ For ALS Awareness effort (including a Google map of all 82 events) online at www.als.net/mlb4als

-Posted by Steve Perrin for ALS TDI

"4 ALS Awareness" Brings Opportunity and Hope in the Fight Against ALS

2009-06-12T15:27:05Z

The ALS Association is honored to be a part of the 4 ALS Awareness initiative as we come together on July 4 to bring attention to the critical need for funding research into Lou Gehrig's Disease. The inspirational story of Baseball's "Iron Man" serves as a beacon that lights The ALS Association's path forward in our quest to develop new therapies and find a cure for the disease that bears his name. As we highlight this tremendous cause in ballparks across our nation, people with ALS and families who are courageously battling ALS are supported by scientists across the world whose work is funded and directed by The Association. In the last decade, The ALS Association has invested nearly $50 million in our global research program that has engaged scientists in an aggressive and innovative search for the underlying causes of ALS and in the quest for swiftly finding new treatments for the disease.

This international ALS research program is complemented by our nationwide network of chapters certified centers and clinics that provide an array of services to thousands of patients and families in the United States. The ALS Association is also fighting ALS with effective advocacy for research, health and long-term care, and caregiver support, working directly with Congress, the White House, other federal agencies and national organizations to accomplish key objectives for the ALS community.

In the coming days and weeks, we will focus on the latest developments and important programs in ALS research from The Association's Lucie Bruijn, Ph.D., our senior vice president of research and development who is directing our research program and the work of scientists in labs and institutions in many countries. Retired MLB pitcher Curt Schilling, a longtime supporter of The ALS Association, will bring his unique perspective gained from nearly two decades of personal involvement with people with ALS and their families. And, Noah benShea's words will be posted here as National Laureate of The ALS Association, an author-philosopher whose insight and compassion comes directly from his own family experience with this disease.

You can be a part of this historic initiative by registering now to participate in the Covering All the Bases® Hitting Challenge. Baseball fans and supporters of the fight against ALS can make a pledge for each hit made by their favorite Major League Baseball® or Minor League Baseball™ team in games played on July 4th.

Together, we can accomplish our vision of a world without ALS!

--Posted by Jane H. Gilbert, President and CEO

>> Donate now to The ALS Association