At the center of this campaign are two well-known Bright Siders. This year’s campaign co-chairs are Treg Charlton, a regional director of real estate for CVS Caremark, and Barry Winovich, Charlton’s lifelong friend and Bright Side of the Road Foundation founder. Both men are living with ALS, and they have teamed with CVS/pharmacy to raise awareness about the devastating disease.

Both will join celebrity sponsors, former NFL player Kevin Turner, who also has ALS, and country music star Ty Herndon, as spokespeople to educate the public through in-store videos and events and by sharing their own personal stories. Herndon’s inspirational “Journey On,” the official song for Turner’s nonprofit ALS organization, The Kevin Turner Foundation, will be featured prominently in this year’s campaign.

Treg Charlton, 45, of Chagrin Falls, Ohio is a young father who was diagnosed with ALS in March 2010. Using the Researching a Cure campaign as a platform, Charlton has become an inspiration to others living with ALS. “With the support of my wife, Dianne, and our beautiful daughters, I’ve been able to fight this battle with a positive attitude. I continue to remain optimistic about finding a cure, and am proud to work with ATA and CVS/pharmacy to help fund new ALS research.”

Barry Winovich, 45, also of Chagrin Falls, Ohio, has battled ALS since 2006. Winovich joins Charlton — a close friend since grade school — as co-chair of the Researching a Cure campaign. A father of three and loving husband to his wife Kelley, Winovich is the founder of the Bright Side of the Road Foundation, a nonprofit organization dedicated to funding scientific research into the cause of and cure for ALS.
Each year, Jon Roberts, executive vice president for CVS Caremark who lost his wife to ALS, serves as honorary chair of the Researching a Cure campaign because of his personal connection to the disease.

Roberts said, “I know how difficult it can be to fight this terrible disease, and I’m amazed by Treg, Barry and Kevin’s courage and commitment to fundraising for ALS research. The stories of these young men have an impact on all of us at CVS/pharmacy, our customers and especially those living with ALS. I want to thank them and Ty Herndon for creating awareness of ALS and motivating CVS/pharmacy customers to donate to this very important campaign.”

ALS is a neurodegenerative disorder that is characterized by progressive degeneration of motor nerves in the brain and spinal cord, typically leading to paralysis and death within four to six years. There is no known cause or cure for ALS, which affects approximately 25,000 Americans, with 5,000 new cases diagnosed each year.

Dr. Robert H. Brown, Jr., executive director of ALS Therapy Alliance, said, “As the largest corporate donor of the ALS Therapy Alliance, CVS/pharmacy has been instrumental in making the ALS research that has been conducted over the past 10 years possible. Their annual in-store campaign provides the funding we need to understand the cause, risk factors and progression of ALS with the ultimate goal of finding a cure. Thanks to the efforts of CVS/pharmacy and its customers, we’re conducting ground-breaking research that is bringing us one step closer to finding a cure for ALS.”

Through the Researching a Cure campaign, CVS/pharmacy has raised more than $23 million in its stores and online at www.cvs.com, to fund new clinical research with the aim of discovering a treatment or cure for ALS. The 2011 campaign will run through June 25.

To learn more about this year’s Researching a Cure campaign, view the Researching a Cure video or make a donation, please visit www.ResearchingACure.org. To learn more about Kevin Turner’s commitment to ALS research and to view Ty Herndon’s “Journey On” video, visit www.KevinTurnerFoundation.org.

Nothing for you to do, except be aware that CVS will be asking everyone for a buck for ALS research from June 5-25 - and our friend Barry will be the face of the nationwide campaign!

Thanks to our good friend Treg Charlton for helping to make this a reality!

The ALS Therapy Alliance’s Researching a Cure Campaign is entering its 10th year starting in 2011. A decade’s worth of great strides has been made in leading-edge research to find a cure for this devastating and fatal disease known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease.

The ALS Therapy Alliance’s partners have been pivotal in providing additional research and insight into potential treatments for ALS and other related diseases.

Currently, CVS/pharmacy is the largest corporate donor to the ALS Therapy Alliance. By asking its customers to donate to the cause for the last nine years, CVS/pharmacy and its team have helped raise nearly than $24 million for the ALS Therapy Alliance and its participating members.

Follow their mission on Facebook!

AJ Melaragno’s 5th Annual Memorial Scramble, held on Saturday May 22nd at the beautiful Willow Crest Golf Course in Oakbrook, IL, raised $48,500 to support ALS research.

Event organizer AJ Melaragno was proud of his golfers that more than doubled last year’s record fund-raising event (which raised over $22,000 for ALS research). Golfers were able to play in the scramble event while raising funds using various online tools supplied by Bright Side of the Road Foundation.

Event founder A.J. Melaragno explained his mission. “My good friend Barry Winovich was diagnosed with ALS, better known as Lou Gehrig’s Disease, in March 2006,” he said. “But Barry will never give up. I’ve looked into his eyes and seen a passion to beat this disease. It’s my goal to use my Memorial Scramble to raise substantial funding for ALS research.”

A big Bright Side “Thank You” to all of our corporate sponsors who also helped to make this event possible.

Researchers from Indiana University and Johns Hopkins found that the drug safely slowed the deterioration of some daily activities of ALS patients including speaking, walking and dressing.

“The research demonstrates that talampanel appears able to slow the progression of disabling ALS symptoms,” said Dr Jeffrey Rothstein, senior scientist on the study.

“The effect isn’t overwhelming at the dosage of medicine used in this early, very small trial,” he adds. “Still, having promising human data is reason enough to keep it in the drug pipeline where we can really find out where it stands for patients.”

The Phase II testing of talampanel was only designed to discover its competency and safety on a small scale. Larger trials will need to be conducted before research moves forward.

An international trial is currently under way and should be completed by the end of 2010.

Read the full details at Science Daily

Knopp has completed the randomized, placebo-controlled portion of its Phase 2 studies of KNS-760704 in 102 ALS patients and expects to initiate Phase 3 studies in the U.S. and Europe in 2010. Subjects who completed the Phase 2 program were offered enrollment in an ongoing, 48-week open-label safety extension in which all participants are receiving the highest dose tested of KNS-760704.

The Fast Track Program was created to facilitate the development and expedite the review of new drugs with the potential to meet unmet needs in serious or life-threatening conditions. ALS is a universally fatal disease of progressive paralysis with limited treatment options.

“Knopp Neurosciences is very pleased to receive Fast Track designation and the recognition that KNS-760704 holds the potential to address unmet needs in ALS,” said Michael Bozik, M.D., president and CEO of Knopp. “We are pursuing every available opportunity to accelerate the development of KNS-760704, and will take full advantage of the opportunities under Fast Track to work with the FDA in designing a program to demonstrate the drug’s safety and efficacy.”

About KNS 760704

KNS 760704 is a low molecular weight benzothiazole shown to improve mitochondrial function and to confer significant cellular protection in neurons under stress. The chirally pure form of the synthetic benzothiazole (6R)-2-amino-4,5,6,7-tetrahydro-6-(propylamino)benzothiazole, KNS-760704 is highly orally bioavailable, water soluble, renally excreted, and only moderately protein bound. In Phase 1 studies, the compound was shown to be safe and well tolerated in healthy human subjects. KNS 760704 has received orphan drug designation from the U.S. Food and Drug Administration and the European Medicines Agency for the treatment of patients with ALS.

About ALS

Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease and Charcot’s sclerosis, is a rapid, universally fatal neurodegenerative disorder characterized by progressive muscle weakness and wasting. ALS affects adults in the prime of life and creates a substantial burden for caregivers. U.S. prevalence is approximately 20,000 and the global incidence is approximately two per 100,000. Worldwide prevalence estimates of ALS range from 2 to 9 people per 100,000. Only one drug has been approved for the treatment of ALS. Life expectancy after symptom onset is usually three to five years.

About Knopp Neurosciences Inc.

Knopp Neurosciences is a drug discovery and development company focused on delivering breakthrough treatments for neurological disorders through innovation, experience, and partnership. The company’s lead product candidate is KNS 760704, an orally bioavailable small molecule in development for the treatment of ALS. Knopp’s leadership includes experienced neuroscience drug development and discovery executives formerly associated with major pharmaceutical companies. Knopp’s financing has been led by Saturn Capital Inc. of Boston as placement agent and Saturn Partners II as lead funder.

The molecules, known as immature superoxide dismutase 1 or SOD1, can’t interact normally with metals that provide stability and instead become destructive knots that are seen in one inherited form of amyotrophic lateral sclerosis, the formal name of Lou Gehrig’s disease, the University of Texas Health Science Center at San Antonio reports.

The center’s research, published in the journal Biochemistry, may shed new light on what triggers ALS, says lead author Duane Winkler.

His observations were made after examining new 3-dimensional images of the abnormal molecules in the center’s X-ray crystallography lab.

More than 100 mutations are known to impair the function of SOD1 molecules.

The Texas study focused on mutations that prevent the molecule from interacting normally with a second molecule called CCS, short for copper chaperone for SODI.

Winkler says CCS is like a waiter serving up orders of copper and zinc.

(Apr. 21, 2009) — Amyotrophic lateral sclerosis (ALS) is a fatal disease that damages key neurons in the brain and spinal cord. The disease causes progressive paralysis of voluntary muscles and often death within five years of symptoms. Although ALS (Lou Gehrig’s disease) was discovered over a century ago, neither the cause nor a cure have been found, but several mechanisms seem to play a role in its development, including oxidative stress.

Coffee, Caffeine and ALS

Researchers agree that ALS is a multifactorial disease that involves a complex interplay between a genetic predisposition and environmental factors. One environmental factor is diet. With oxidative stress (which damages the cells) a common concern in ALS pathology, it is worth examining what role antioxidants (which confer benefits to the cells) might play.

Antioxidants (the vitamins and nutrients that protect the cells from damage) are found in commonly consumed beverages and foods. Coffee in particular has received attention as a potent dietary antioxidant. It is worth noting that coffee has significantly more antioxidant capacity than cocoa and green, black or herbal teas. However, coffee contains several components, the largest of which are caffeine and chlorogenic acid, a dietary polyphenol that is beneficial to the immune system.

Previous studies have shown positive effects with coffee, caffeine, or chlorogenic acid supplementation in improving oxidative stress and its associated cell death mechanisms.

A New Study

A new study investigates the role of dietary intervention focused on an antioxidant popular in diets worldwide–coffee. The researchers examined the effect of coffee, caffeine and chlorogenic acid supplementation on markers of oxidative stress, antioxidant enzyme protein content and cell death in male and female mice models of ALS.

The study, entitled Caffeine Reduces Motor Performance and Antioxidant Enzyme Capacity in the Brain of Female G93A Mice, An Animal Model of Amyotrophic Lateral Sclerosis (ALS) was conducted by Rajini Seevaratnam1 supervised by Mazen J. Hamadeh1,2 , and co-authored by Sandeep Raha2 and Mark A. Tarnopolsky2 (1School of Kinesiology and Health Science, York University, Toronto, ON, Canada; 2Department of Pediatrics and Medicine, McMaster University Hamilton, ON, Canada). The researchers will present their findings at the 122nd Annual Meeting of the American Physiological Society, which is part of the Experimental Biology 2009 scientific conference. The meeting will be held April 18-22, 2009 in New Orleans.

Study Design

* Fifty-one G93A mice were randomly divided into eight groups: control (6 males, 8 females), coffee (5 males, 7 females), caffeine (5 males, 8 females), chlrogenic acid (5 males, 7 females). The control groups were fed a standard rodent diet and were not given any additional supplements. The intervention groups were provided with coffee, caffeine, and chlorogenic acid extracts, respectively, in amounts found in 5-10 cups of coffee per day, controlled for body weight.
* Clinical measures: Food intake, body weight, body condition, ability to move, clinical score, and motor performance were all assessed for the effect of diet and time prior to animal sacrifice.
* Molecular measures: Markers of oxidative stress (4-HNE; 3-NY), antioxidant enzyme protein content (MnSOD; CAT; GPx1; GR; GPx1 to GR ratio), and cell death (Bax; Bcl-2) were analyzed using the brains of these mice at age 108 days.
* Statistical analysis was conducted for males and females separately.

At the end of the study, the researchers found that:

In males:

* Coffee: increased food intake by 21%, decreased markers of oxidative stress by 39-65%, increased markers of antioxidant enzyme protein content by 46-139%, and decreased markers of cell death by 34-36%.
* Caffeine: increased food intake by 22%, decreased markers of oxidative stress by 45-81%, increased markers of antioxidant enzyme protein content by 21-99%, and decreased markers of cell death by 17-22%.
* Chlorogenic acid: increased food intake by 12%, decreased markers of oxidative stress by 25-35%, increased markers of antioxidant enzyme proteins by 23-44%, and decreased cell death by 41-44%.

In females:

Coffee: increased food intake by 30%, decreased markers of oxidative stress by 64%, but did not increase markers of antioxidant enzymes or decrease markers of cell death.

Caffeine: increased food intake by 28%, decreased motor performance by 20%, decreased markers of oxidative stress by 58%, decreased markers of antioxidant enzyme protein content by 11-48%, and increased cell death by 23-74%.

Chlorogenic acid: increased markers of oxidative stress by 178%, had equivocal effects on markers of antioxidant enzyme protein content, and decreased cell death 33-39%.

Conclusion

According to Ms. Seevaratnam, “If we were to extrapolate these results to human patients with ALS, then coffee appears to be beneficial for men, both reducing oxidative stress and cell death, and increasing antioxidants.  But for women, caffeine appears to be harmful. Women with the disorder may want to restrict caffeine consumption, or switch to decaffeinated products which contain the antioxidants, but with little caffeine.”
Adapted from materials provided by American Physiological Society.

“This is the world’s first search engine where patients can share disease-linked genetic information and use it to find other patients like them,” says James Heywood, co-founder and chairman of PatientsLikeMe. “Combined with our outcome, treatment, and symptom information, this represents a patient-centered model for realizing the goals of personalized medicine today.”

A major step toward incorporating genetics into the PatientsLikeMe platform for all diseases, the Genetics Search Engine is designed to allow patients to share additional data on genetic causes of ALS and help the research community learn more about the disease.

“With 64 patients sharing genetic information in the community, we have already begun to see variations in the progression rate by specific mutations,” says Catherine Brownstein, Ph.D., geneticist and researcher at PatientsLikeMe. “Transformative questions about how the disease varies by cause might be able to be answered far quicker than before.”

Margrit Betke, a College of Arts & Sciences associate professor of computer science at Boston University, believes the networked world isn’t nearly as inclusive as it ought to be.

“The community of people with severe disabilities is not really well served by computer science,” Betke says. Many people impaired by diseases like multiple sclerosis or ALS can’t type Google searches. They can’t play video games, and they can’t click on a friend’s e-mail.”

Click to find out how Margrit is helping folks with ALS interact with ther computers…

The campaign shines the spotlight on men and women from all walks of life who despite having the progressive, neurodegenerative disease - which on average has a survival rate of two to five years from the time of diagnosis - think of and help others in similar circumstances before themselves. Caregivers of people with ALS also are profiled in the campaign.

A former editor, golf course superintendent, soldier and local caterer, and the list goes on.

People who chose quite different career paths, yet all with something in common: Each is fighting ALS and has not given up on life and is helping others.

“Each of the 30,000 people in this country fighting ALS is a hero and has an inspirational story to tell,” said Jane H. Gilbert, president and CEO of The Association. “We are honoring those battling Lou Gehrig’s Disease who courageously embody the spirit of living life to the fullest and are making a difference in their community.”

The campaign also is reinvigorating those on the frontlines of helping patients and their loved ones.

“The national campaign ‘ALS Across America’ shares stories of courage and strength and unites ALS communities,” said Marilyn Simon-Gersuk, vice president of community services for The Association. “These people inspire and encourage us to be relentless in our search for a cure and in our commitment to help people with ALS and families.”

Prior to his diagnosis in 1997, Michael Jack, 42, rode his bicycle to work every day and participated in various physical activities including rollerblading. A resident of Alexandria, Va., Jack was the editor at the American Institute of Architects and an account executive for the public relations firm Porter Novelli. His new passion is helping The Association’s DC/MA/VA Chapter help others.

“Michael has always been someone looking to help others,” said Dan Iglhaut, 44, his caregiver. “As a volunteer ‘buddy’ and team leader with the Whitman Walker Clinic, an AIDS service organization, Michael continued to work with his client well after his ALS diagnosis and was honored as volunteer of the year. Michael has embraced The ALS Association not just for his needs but as an outlet to support his fellow patients with information, friendship and laughter.”

Steve Franks, 50, may have lost the ability to perform many of his tasks at his former job at Mainlands Golf Course in Pinellas Park, Fla., however, that has not stopped him from spearheading plans to transport 150 mannequins across the state in the “Piece by Piece Awareness Campaign.” Each mannequin represents a person who ALS has affected and whose body has literally been stolen “piece by piece.”

“The mission Steve is embarking on this year will be his biggest attempt to focus the public’s attention on this devastating disease,” said Kamden Kuhn, public relations coordinator for The Association’s Florida Chapter.

A former soldier and Army Security Agency communications worker, Bill Hamley, 65, gives inspiring speeches to such groups as the Physical Therapists Club at Quinnipiac College. The club members formed a Walk to Defeat ALS™ team.

“Bill is important to the chapter because of who he is and how he relates to others,” said Andy Byrne, patient services assistant for The Association’s Connecticut Chapter. “At every opportunity he helps to spread awareness both of the disease and of The ALS Association. Bill is a gentle man with a great deal of quiet strength. He has a deep spirituality that is reflected in everything he does.”

A local caterer turned ALS-educator and advocate, Jenny Hoff, 50, has made a strong impact on the community by tirelessly working on the telephone and her computer to assist others living with ALS and is a mentor to young people who she encourages to excel in their homework.

“Jenny is a tremendous advocate for The ALS Association who has contributed so much of her time locally and throughout the region to help educate and raise ALS awareness,” said Jennifer Hanson, development associate for The Association’s Evergreen Chapter. “She has embraced her ALS diagnosis with an incredible positive attitude and has become a tremendous advocate in our region to help teach others about this disease.”

Throughout ALS Awareness Month, The Association and its more than 100 affiliates will reach out to communities across the country to educate the public about Lou Gehrig’s Disease and urge people to join The Association in the fight to make ALS a disease of the past. National ALS Awareness Month activities include proclamations issued by cities and states.

The Association’s National ALS Advocacy Day and Public Policy Conference, which has grown to be the single largest gathering of the ALS community, and is part of ALS Awareness Month, will be held this year on May 10-12 in Washington, D.C.

People with ALS and families from across the country travel to the Nation’s Capitol to tell their stories in meetings with nearly every member of Congress, advance The Association’s public policy priorities, educate Congress about the true nature of this disease, and let them know why more must be done in the fight for a treatment and cure.

The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

For more information about The ALS Association, visit our Web site at www.alsa.org