I was very excited to see the story about Steve Gleason that aired during the Super Bowl's pre-game show this past Sunday.

It was a short documentary from Sports Illustrated about Steve's battle with ALS (amyotrophic lateral sclerosis or Lou Gehrig's Disease).

Millions of people were educated about this devastating disease that has not received as much media attention as other, more common diseases.

I encourage you to learn more about Steve and his courageous fight. Even through all of this, Steve, like so many others afflicted with this disease, is letting his voice be heard for as long as he can speak.

Learn more...>

This is an inspiring story about Greg Merfeld who has a relatively rare form of the disease known as familial ALS. His mother discovered through her genealogy work that 20 people on Greg's father's side of the family had the disease.

Because of this, his children have a 50 percent chance of getting ALS. This notion led Greg to start thinking not so much about a cure for himself, but for his two teenage children.

He did a clinical trial for 12 months, but at the end of it, decided to try something else. He decided to work towards setting up a scholarship fund for children of people with ALS.

The scholarship has $175,000 in the bank and $100,000 more in pledges. Greg is working with the Ventura County Community Foundation to help administer the scholarship.

To learn more about Greg's amazing mission and this fund, please click here...>

Seen in the photo from left to right are: Boston Red Sox Ball Girl; President and Chief Executive Officer of CVS Caremark Larry Merlo; Executive Vice President of CVS Caremark Jon Roberts; Former NFL Football Player, ALS patient and Celebrity Spokesperson of the CVS/pharmacy "Researching a Cure" campaign Kevin Turner; President of ALS Therapy Alliance Dr. Robert Brown, Jr.; Directors of ALS Therapy Alliance Dr. Merit Cudkowicz, Dr. Larry Hayward and Dr. Robert Horvitz; Regional Director of Real Estate for CVS Caremark, ALS patient and Co-chair of the CVS/pharmacy "Researching a Cure" campaign Treg Charlton; ALS patient and Co-chair of the CVS/pharmacy "Researching a Cure" campaign Barry Winovich; and Boston Red Sox Ball Girl. (Photo Credit: Sue Bruce Photography)

September 1 marked the end of the 2011 Researching a Cure fundraising campaign held each year at CVS/pharmacy locations throughout the U.S.  A huge thanks to the colleagues at, and customers of, CVS who helped us raise $4.3 million this year for ALS research.

Members from our Board of Directors, CVS executives, and ALS co-spokespeople and their families all came together at Fenway Park in Boston, MA to celebrate the occasion and create awareness of ALS.

To learn more about the results of this year's fundraising campaign, please visit our Media Room.

The Neurology Clinical Trial Unit (NCTU) at Mass General is offering a great funding opportunity for investigators and companies interested in conducting Phase I & II Trials in ALS.

The goal of this effort is to help push forward promising ALS research to clinical testing. Deadline for proposals is September 1st.

For complete details, click here...>

Read this informative article about Lyme Disease and its connection to ALS.

Learn more about Dr. Sponaugle's connection to our partner Kevin Turner, founder of the Kevin Turner Foundation.

To read article, click here...> 

Bowdoin College is sponsoring a three-day workshop from August 4 - 6, 2011 at Bowdoin College, Brunswick, Maine, preceded by a one-day short course, focused on the linkages between marine and freshwater cyanobacterial blooms, toxicity, and human health impacts.

The goal of this workshop is to bring together specialists in medicine, neurology, toxicology, epidemiology, ecology, oceanography and limnology from medical, academic, research, federal, state and tribal institutions to present and discuss the current state of understanding at the crossroads of these diverse fields as they relate to Cyanobacterial Blooms and Human Health.

The objectives of this workshop are three-fold:

• Provide a synthesis of current understanding within each field of the cyanobacteria and human health connections;
• Generate synergistic collaborations between experts from diverse fields to develop strategies for epidemiological investigations within the context of environmental monitoring of compounds and organisms having potentially harmful consequences to human health;
• Identify successes and future challenges for the merging fields, particularly within the context of environmental change and increasing global populations.

Workshop Structure

The workshop will consist of invited plenary lectures in four topical sessions, short invited talks aimed to introduce topics for panel discussion, and contributed posters in all relevant areas.

Short Course

With the goal of education and cross-fertilization, a one-day short course will be held Wednesday, August 3, 2011 at Bowdoin College. The course will be taught by four instructors, focused on the topics of the four plenary sessions. The lecturers will provide upper level undergraduate, graduate and non-specialists with the background and vocabulary necessary to participate more proactively in the workshop.

For Information and Registration

http://www.bowdoin.edu/earth-oceanographic-science/workshops/index.shtml

Tom Maniatis, Ph.D. spent most of his career as a self-described “basic scientist” studying genes. However, when his sister was diagnosed with ALS 12 years ago, Dr. Maniatis became involved in ALS research. Initially he served as an advisor to the ALS Association, but after ALS took his sister’s life he initiated research in his own laboratory.

His current ALS research focus is to identify early events in the ALS disease process. “Scientists have been studying the causes of ALS in mouse models for many years, and these studies have provided many insights. However, it has been very difficult to pinpoint the earliest events that trigger the disease” said Dr. Maniatis.

Dr. Maniatis' laboratory is exploiting new stem cell technology that has made it possible to reprogram skin cells from ALS patients to produce motor neurons for studies in cell culture. He is applying powerful tools for genome research to these cells in an effort to detect molecular differences between normal and ALS motor neurons.

“We hope that studies of motor neurons produced in this manner will provide clues to the cause of ALS”, said Dr. Maniatis. "In fact, preliminary data has revealed significant differences between motor neurons from control and ALS patient samples."

Dr. Maniatis is particularly excited about the recent discovery in other labs that two genes that cause ALS when altered by mutations (familial ALS) also happen to function in gene expression - the focus of his basic research program. Thus, his lab has combined the approaches to study ALS described above with those of his basic research to search for new clues to the causes of ALS.

Dr. Maniatis is the Isidore S. Edelman Professor and Chairman of Biochemistry and Molecular Biophysics at the Columbia University Medical Center. He received his bachelor’s degree from the University of Colorado at Boulder, and a doctorate in molecular biology from Vanderbilt University. His postdoctoral studies were carried out at Harvard University and the Medical Research Council for Molecular Biology in Cambridge, England. He’s held research and academic positions at Harvard University, California Institute of Technology and the Cold Spring Harbor Laboratory. He also serves on the Board of Directors of the ALS Therapy Alliance.

Dr. Maniatis has won numerous awards, including the Eli Lilly Award in Microbiology and Immunology early in his career, and more recently the Scientific Achievement Award of the American Medical Association. He is a member of the U.S. National Academy of Science.

He’s best known for pioneering the development and application of recombinant DNA methods to the study of gene regulation. His research has impacted a broad spectrum of biomedical fields, from basic mechanisms of gene expression to advances in understanding human genetic and inflammatory diseases. He has also been a pioneer in biotechnology, founding companies that developed several FDA approved drugs. His leadership was recognized by the Jacob Heskel Gabbay Award in Biotechnology and Medicine.

For more information about Dr. Maniatis, visit or Directors & Staff page.

Last week, our team held a 15 minute teleseminar on ways you can easily help support our 2011 Researching a Cure fundraising campaign happening now through June 25 at CVS/pharmacy locations throughout the country and online at www.CVS.com/ALS.

100% of funds donated through this campaign supports the ALS Therapy Alliance and their ongoing research with scientists and doctors all over the world to find a cure.

How can I help?

Here are the top 16 things you can do to help support the cause and create awareness of this year's fundraising campaign:

1. 1. Visit your local CVS/pharmacy and make a donation at the register starting June 5th.

2. Donate online at www.cvs.com/als starting June 6th.

3. Send an email blast to friends and family encouraging them to spread the word and/or make a donation at their local CVS/pharmacy or online – use our interactive PDF located here...>

4. Share tweets on Twitter – we offer samples located here...>

5. Share messages on Facebook - we offer samples located here...>

6. Follow us on Twitter and Facebook and RT and re-share our messages with your followers and friends

7. Put a banner ad on your website, blog or newsletter - we offer 4 sizes to choose from located here...> 

8. Print out our informational flyer and pass out or post 

9. Share our photos in a story you write for your blog or newsletter or social site

10. Include one of our PSAs on your site

11. Upload our campaign video to your site

12. Call your local radio station to see if they would interview you about your connection to ALS and mention the campaign

13. Call your local TV station and ask if they would share one of our PSAs with their audience

14. Call you local newspaper and share your connection with ALS and ask them to support the campaign by creating awareness with their readers

15. Partner with a CVS/pharmacy in your location to host an event or pass out vendor donations – contact us directly if you would like assistance setting this up

16. Show us how you supported the cause by posting a picture of yourself at your local CVS/pharmacy on our Facebook page at www.facebook.com/alstherapyallianceinc

WHEN: Thursday, June 2nd
TIME: 1:00pm EST
WHAT: Learn how you can join the cause and help create awareness of this year's fundraising campaign
HOW: Dial (712) 432-3900 and enter access code 116221#
WHO: Traci Bisson, ALS Therapy Alliance, and Treg Charlton & Barry Winovich, 2011 Researching a Cure co-spokespeople

On Thursday, June 2nd at 1:00pm EST, the ALS Therapy Alliance will be holding a 15-20 minute informational teleseminar about the top 20 things you can do to help create awareness of ALS this June and support the Researching a Cure fundraising campaign.

Traci Bisson of the ALS Therapy Alliance will be joined by 2011 co-spokespeople Treg Charlton and Barry Winovich. Treg will share their stories about being diagnosed with ALS. In addition, Traci will share tips, tools and resources that have been developed for helping supporters create awareness of this year's campaign at www.ResearchingACure.org.

To join us on this 15 - 20 minute informational call, please dial the number above at 1:00pm EST on June 2nd, and enter the access code provided. This teleseminar will be recorded so you will be able to access after the event if you are unable to attend.

Barry was diagnosed with ALS in 2006. So how was he able to compete in a marathon to raise awareness of and funds for ALS research?

To read more about this courageous person and his story, click here...>

The Northeast ALS Consortium (NEALS) will be hosting an interactive Webinar about  Nutrition in ALS: Clinical Care & Research Update.

DATE: Friday, May 20, 2011
TIME: 3:30 p.m. - 4:30 p.m. EST
WHO: Rup Tandan, MD and Anne Marie Wills, MD

HOW TO JOIN: Space is limited. To reserve your Webinar seat now, click here...> After registering, you will receive a confirmation email containing information about joining the Webinar.

DETAILS: Dr. Rup Tandan (UVM) and Dr. Anne Marie Wills (Mass General) will present on the importance of nutrition in the care of ALS and on a crucial new clinical trial studying the affect of diet in ALS.

NEALS hosts regular Webinars on important clinical and clinical research topics for people with ALS. For a list of other upcoming NEALS Webinars please click here...>

Lawrence Hayward, M.D., Ph.D. received his doctorate degrees from Baylor College of Medicine in Houston and completed a neurology residency in 1993 at Massachusetts General Hospital. He then started working in Dr. Robert Brown’s laboratory as a Neuromuscular research and clinical fellow. After following ALS patients in the clinic for several years, Dr. Hayward initiated biochemical studies to identify toxic properties of mutant SOD1 enzymes that cause a familial form of ALS.

Along the way, he also encountered a more personal connection to ALS, when it became clear that a few members of his own extended family had been diagnosed with the disease.

“Although the total number of individuals living with ALS may not be as high as those with more common neurodegenerative conditions, ALS nevertheless impacts families or friends with surprising frequency,” Dr. Hayward explained.

In 2000, he started his own ALS research laboratory at the University of Massachusetts Medical School, where he follows patients in the neuromuscular clinic and teaches medical and graduate students.

Dr. Hayward, an original member of the ATA Board of Directors, became interested first to define the consequences of SOD1 mutations upon the folding of the protein and its interactions in cells and mouse model tissues. Since 2008, his lab has focused on establishing new in vivo ALS models using both mouse and zebrafish systems.

“Genetically engineered mice are highly informative to ALS research because these mammals can mimic the conditions found in ALS patients on an accelerated time scale,” Dr. Hayward said.

He is currently studying newly identified ALS genes that may perturb RNA metabolism, which is normally critical for the health of the motor neurons. Initial studies suggest that mutant variants of an ALS gene called FUS, discovered by Dr. Brown’s group, may alter the ability of motor neurons to deal with environmental stresses. Early support from the ATA to establish mutant FUS transgenic mouse models in the Hayward lab led to an ongoing NIH-sponsored study to characterize the FUS mouse phenotypes.

In a promising new ATA-funded study, Dr. Hayward is examining the earliest consequences of mutant FUS in the motor neurons of zebrafish embryos.

“Because zebrafish eggs can be manipulated more easily than mouse embryos and develop very rapidly to form a functioning spinal cord within 2-3 days, these animals can be used to explore many hypotheses quickly, and the most promising results can further be validated in mouse models," Dr. Hayward explained. “Zebrafish embryos remain transparent as they develop, so scientists can express florescent proteins that allow visualization of the structure and physiological state of specific spinal cord cells in living animals.”

The hope is that zebrafish embryos will allow the characterization of early perturbations caused by the mutant ALS genes that may be driving the subsequent neuronal loss. Scientists can turn on or off genes of interest in hundreds of zebrafish eggs and – a few days later – have many animals ready for analysis or even for screening of drugs that might counteract the effect of the mutants. Findings from the zebrafish can be transferred to the mouse models for further study and the possible discovery of new therapeutic targets in ALS.

For more information about Dr. Hayward, visit or Directors & Staff page.

Jonathan Roberts, Executive Vice President and COO for CVS Caremark Pharmacy Services, has been touched by ALS in a number of ways. First, a friend and colleague at CVS, John Finneran, was diagnosed with the disease. Soon after, Roberts’ wife, Resi, was diagnosed with ALS. Her disease progressed rapidly and she passed away in 2003. Since then, other CVS colleagues and a family friend have also been diagnosed.

“I have lots of connections to ALS. Before John Finneran was diagnosed, I knew what ALS was, but didn’t know anyone living with the disease. Now, I wonder if I’m just more aware of it, or if its prevalence is increasing,” said Roberts.

As the father of three children – two boys and a girl – he notes that ALS doesn’t just afflict the patient. It impacts the entire family. Therefore, Roberts, an active member of the ALS Therapy Alliance’s (ATA) board of directors, is working to find a cure.

As Co-Chair of CVS/pharmacy’s annual ALS in-store fundraising initiative, Roberts is proud that the campaign has raised nearly $24 million over the last nine years. The 2011 campaign will run from June 5-25.

“The success of our campaign is a testament to our store employees who support it, and our customers who have generously donated to the cause every year,” Roberts explained. “For every customer and CVS colleague that makes a donation, we’re one dollar closer to curing this devastating disease.”

As part of his role on the ATA board, Roberts reviews research grant proposals, which he calls “a very interesting process.” In addition, he serves on the ALS Association’s board of directors and is a trustee. He is also involved with their Rhode Island chapter, regularly supporting their annual "Evening of Hope" dinner.

Roberts first learned about the great work Dr. Robert Brown was doing when his wife got sick. The Roberts family was living in Atlanta, and local physicians were having difficulty diagnosing Resi. Roberts found Dr. Brown, a leading ALS clinician, and brought Resi to his practice.

In 2002, CVS/pharmacy and the ALS Therapy Alliance collaborated on a small pilot program in New England, raising funds and awareness for ALS. From there, the campaign evolved into an annual, national effort, which continues today, nearly a decade later.

Roberts is a seasoned pharmacy executive with more than 30 years of experience in the field, 21 of those with CVS Caremark. Roberts oversees CVS Caremark’s operations, as well as pharmaceutical purchasing and marketing.

He earned his degree in pharmacy from the Virginia Commonwealth University School of Pharmacy, and is a graduate of the Wharton Executive Management Program.

For more information about Mr. Roberts, visit or Directors & Staff page.

Merit E. Cudkowicz, MD, MSc. has had a connection to – and a passion for – ALS since she met her first patient with the disease in 1994. More recently, she was personally impacted when she lost a dear friend to ALS.

She’s currently working on a variety of “very exciting and promising” ALS-related projects and clinical trials.

One such study examines biomarkers: people with ALS donate blood, spinal fluid and skin cells, which global researchers study for answers about this mysterious disease.

Twenty-five NEALS Centers are currently participating in this project, searching for identifying factors that contribute to ALS. This study strives to facilitate earlier and more accurate disease diagnosis and treatment interventions. Additionally, it gives hope that scientists will ultimately discover new treatment options.

This biomarker project is sponsored by the ALS Association (ALSA), ALS Therapy Alliance (ATA) and the National Institute of Health (NIH), in conjunction with Metabolon, Inc. Dr. Cudkowicz will discuss this study in an upcoming webinar on April 6th.

“We’re also working on some very exciting trials, and we’re hoping to have more answers in a year or a year and a half,” Dr. Cudkowicz explained. One of the hopeful studies is a NIH supported study of Ceftriaxonein people with ALS. Ceftriaxone protects motor neurons from injury and is currently in phase 3 testing for ALS. The study is actively recruiting participants throughout the United States and Canada.

Dr. Cudkowicz is also involved in a promising gene therapy trial for people with familial ALS from mutations in SOD1currently in a Phase 1 study.

“It’s really important to try to turn off the gene that causes familial ALS,” Dr. Cudkowicz explained.

Dr. Cudkowicz joined the ATA Board of Directors two years ago, due in part to her strong, long-standing professional relationship with Dr. Robert Brown.

“Dr. Brown has been a role model and mentor to me since my resident days,” Dr. Cudkowicz said. “He’s been fundamental in teaching me about ALS, including research and patient care, which has changed dramatically in the last decade.”

Dr. Cudkowicz is the Julieanne Dorn Professor of Neurology at Massachusetts General Hospital and Harvard Medical School. She earned her Bachelors of Science degree in Chemical Engineering at the Massachusetts Institute of Technology and completed medical training at Harvard Medical School. She obtained a Master's degree from the Harvard School of Public Health.

Her research and clinical activities are dedicated to the study and treatment of patients with neurodegenerative disorders, in particular ALS. Dr. Cudkowicz directs the Massachusetts General Hospital ALS clinic and the MGH Neurology Clinical Trials Unit, and is one of the founders and co-directors of the Northeast ALS Consortium (NEALS), a group of 97 clinical sites in the United States and Canada dedicated to performing collaborative, academic-led ALS clinical trials.

For more information about Dr. Cudkowicz, visit or Directors & Staff page.

The Northeast ALS Consortium (NEALS) will be hosting an interactive Webinar about - Contributing to an ALS Sample Repository to Help Forward ALS Research.

DATE: Wednesday, April 6, 2011
TIME: 2:00 p.m. - 3:00 p.m EST
WHO: Robert Bowser, PhD, Merit Cudkowicz, MD, MSc 
and Carol Milligan, PhD

HOW TO JOIN: Space is limited. To reserve your Webinar seat now, click here...> After registering, you will receive a confirmation email containing information about joining the Webinar.

DETAILS: Expert panelists will discuss and answer questions about:

The importance of biosamples to ALS research
How biosamples are used to further research
Why finding a biomarker is so important to ALS
Ways to donate samples and how the donation is collected

This free Webinar is for people with ALS, their families and caregivers. Please feel free to forward announcement to those interested.

NEALS hosts regular Webinars on important clinical and clinical research topics for people with ALS. For a list of other upcoming NEALS Webinars please click here...>

This sweet birthday card was given to our 2011 Researching a Cure co-spokesperson, Treg Charlton, from his daughters - a simple reminder that it is not just the afflicted that suffer.

In 1986, Dr. H. Robert Horvitz’s father was diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). He came to Boston and was seen by Dr. Robert Brown, a supportive, sympathetic neurologist from Mass General Hospital. After ongoing talks about ALS, Dr. Horvitz and Dr. Brown decided to collaborate to study the genetics on ALS.

Since then, a small team engaged by Dr. Horvitz has performed research in Dr. Brown's laboratory. This effort, in conjunction with that of other scientists globally, led to the discovery that one gene is responsible for familial ALS encodes - the enzyme copper-zinc superoxide dismutase.

In 1989, Dr. Horvitz’s father died from ALS. Seeing his father suffer from – and succumb to – this horrific neurodegenerative disease, reinforced Dr. Horvitz’s strong desire to find a cure.

Dr. Horvitz received the Nobel Prize in Physiology or Medicine in 2002 for his discoveries concerning genetic regulation of organ development and programmed cell death.

Today, his valuable work continues. He is the David H. Koch Professor of Biology at the Massachusetts Institute of Technology (MIT); an Investigator of the Howard Hughes Medical Institute; Neurobiologist (Neurology) at the Massachusetts General Hospital; and a Member of the MIT McGovern Institute for Brain Research and the MIT Koch Institute for Integrative Cancer Research.

Dr. Horvitz graduated from MIT, performed his graduate studies at Harvard University and received his Ph.D. in Biology for biochemical and genetic studies of mechanisms of regulating gene expression. Since then he has studied the development and behavior of the microscopic roundworm Caenorhabditis elegans, and this research has helped define evolutionarily conserved molecular genetic pathways important in human biology and human disease, including the pathway responsible for programmed cell death (apoptosis).

Dr. Horvitz has served on many editorial boards, visiting committees and advisory committees, and has received many honors, including the U.S. National Academies of Science Award in Molecular Biology; the Charles A. Dana Award for Pioneering Achievements in Health; the Gairdner Foundation International Award; the March of Dimes Prize in Developmental Biology; and the Bristol-Myers Squibb Award for Distinguished Achievement in Neuroscience.

For more information about Dr. Horvitz, visit or Directors & Staff page.