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Issue 17 January 2008 In This Issue . . . New Walk Marketing Campaign Opens Door for More Success   Grants Awarded for Projects That Improve Quality of Life       Cambria Biosciences Awarded Contract to Develop ALS Drugs    ‘The Pride of The Yankees’ Is Making DVD Comeback    Did You Know...  The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against amyotrophic lateral sclerosis. Through research, patient services, public policy and education, The Association is dedicated to finding a cure for and improve living with Lou Gehrig’s Disease. Click here to contact your local chapter. New Walk Marketing Campaign Opens Door for More Success The ALS Association has launched an exciting advertising and promotional campaign to support its increasingly successful national signature fundraising event, The Walk to Defeat ALS®, which is held mainly in the spring and fall in 150 cities and attracts 65,000 participants, and make it even more successful. The new Walk to Defeat ALS logo “This is the first time The ALS Association has had a unified marketing campaign behind the Walk to Defeat ALS,” said Ashton Chase, senior director of national signature events for The Association. The Association collaborated on the campaign with advertising and marketing agency Campbell Mithun. “The campaign is arresting without being offensive, and it is visually clean and simple,” said Nena Johansen, an account executive at Campbell Mithun. “We predict the results will be increased walkers, especially new walkers.” The campaign includes a new Walk logo, a television and radio pubic service announcement and a print advertisement. In addition, there will be a poster and other collateral materials. Short, snappy, thought-provoking slogans complemented by a distinctive design will be accompanied by the tagline “Because You Can,” the message of the campaign.  The television public service announcement will be one of the most powerful PSAs The Association has produced in its 22-year history. The PSA combines the stark reality of having ALS and concludes on a positive, proactive note.  Revenue for Walk has increased every year since the event was introduced in 1999 as a pilot program and as a national program in 2000. TOP Grants Awarded for Projects That Improve Quality of Life  The ALS Association has awarded grants through the Clinical Management Research Grant Program that will fund efforts by those in the medical community to measure and improve the quality of life for people living with ALS. The recipients of the two-year grants in 2007 were the University of Illinois Medical Center for the project “External nutrition in ALS patients with ventilatory failure: minimizing the work of breathings,” and the University of Michigan Health System for the project “A randomized crossover study of standard NIPPV and low expiratory pressure NIPPV in ALS patients.” “Since this program started in 1998, the quality of life for people living with ALS has changed for the better dramatically,” said Miriam Brodkin, program manager of the patient services department of The Association. The Association’s clinical management research program seeks to build an increasing evidence base for the symptoms of ALS. “These are very important projects that are based on the day-to-day activities in the quality of life of ALS patients,” Brodkin said. “These are people who have ALS and we are hopeful that this very important program will improve their lives.”  The Association awards up to two clinical management research grants each year. Deciding who should receive grants totaling up to $40,000 each begins in the fall when The Association sponsors a Call for Abstracts. The review of the approximately 30 abstracts that are received starts in January and by August the final decisions are made. Abstract categories include communications, cognitive, nutrition, respiratory, speech, emotional, psychological and care giving. The Call for Abstracts at one time specified the type of projects that should be submitted for consideration but that has changed. “It is an open call now which means we will accept abstracts reflective of the symptom management involved in the progression of ALS. We want to make sure we are covering all of our bases and to provide a full spectrum of what everyone is doing,” Brodkin said. TOP Cambria Biosciences Awarded Contract to Develop ALS Drugs The ALS Association has awarded Cambria Biosciences a $3.5 million contract through its TREAT ALS clinical trials and drug discovery program, an initiative to develop new drug compounds for treatment of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease. Cambria Biosciences robot TREAT ALS (Translational Research Advancing Therapies for ALS) combines efficient new drug discovery with priorities set for existing drug candidates, and to accelerate clinical testing of compounds with promise for the disease. The Association has committed approximately $10 million to TREAT ALS since the program was launched in 2006.  This partnership with Cambria Biosciences, an innovative biotechnology company, builds on previously funded efforts with Cambria to develop unique neuroprotective drug compounds that prevent cell death caused by misfolded proteins that aggregate together within the cell. Mutant copper-zinc superoxide dismutase, or SOD1, is a protein that is misfolded to form aggregates in the motor neurons of some people with inherited forms of ALS. The award to Cambria Biosciences will support the identification of compounds that can block mutant SOD1 protein aggregation and cell death, and the selection of the most suitable compounds to reach motor neurons and their surrounding cells. This will allow researchers to test these compounds in mice that have been bred to express mutant SOD1, which creates an animal model that mimics the human disease.  “This academic-industry partnership is an excellent step forward to achieving the goals of TREAT ALS to ensure accelerated drug discovery and the development of new compounds as clinical candidates for ALS,” noted Dr. Lucie Bruijn, science director and vice president for The Association. The study is a unique collaboration between Dr. Donald Kirsch, senior vice president for drug discovery at Cambria Biosciences, Dr. Richard Morimoto, an international expert in protein misfolding (which can cause cellular damage associated with neurodegenerative diseases) from Northwestern University and Dr. Richard Silverman, a leading medicinal chemist from Northwestern University. “With this award we will be able to set up a virtual mini-pharmaceutical company to pursue new ALS therapies. It is a real privilege to have the opportunity to collaborate on this project with scientists of the stature of doctors Morimoto and Silverman,” Kirsch said. The project team presented results to-date at the international meeting of the Society for Neuroscience in San Diego in November in a poster entitled, “Protein Aggregation and the Development of ALS Therapeutics,” by R. Benmohamed and other researchers. Dr. Leo Liu, CEO of Cambria Biosciences, added: “This partnership further leverages Cambria’s significant and ongoing commitment to develop medicines for underserved neurodegenerative diseases. We are very pleased to work with The ALS Association and appreciate its support of our neurodegenerative disease drug discovery programs.” For more information on TREAT ALS, please see The Association's Web site under the research tab: http://www.alsa.org/research/article.cfm?id=1048 and Laboratory Models in ALS http://www.alsa.org/research/article.cfm?id=812. TOP   ‘The Pride of The Yankees’ Is Making DVD Comeback Boston Red Sox pitcher Curt Schilling, who along with his wife Shonda Schilling and son Gehrig, and The ALS Association’s president and CEO Gary A. Leo, make special appearances to speak about Lou Gehrig’s Disease on the DVD re-release of the movie “The Pride of the Yankees.”   MGM Home Entertainment box art for “The Pride of the Yankees” Since they became involved with The Association in 1992, the Schillings have raised millions of dollars for ALS research and patient and caregiver services by sponsoring such successful fundraisers as the “Curt’s Pitch for ALS” program. Ray Robinson, the author of “Iron Horse: Lou Gehrig in his Time” and a member of The Association’s Greater New York Chapter Board of Directors also is featured on the DVD. “I sincerely hope that the people who watch the film and learn what it is like to have ALS, how The ALS Association is helping people live with the disease and is funding research into a cure and treatments, will contact and support our efforts through donations and as volunteers,” Leo said.   Distributed by MGM Home Entertainment, the 128-minute, black and white film is being re-released to commemorate two anniversaries: the 85th anniversary of the opening of Yankee Stadium in 1923, the same year New York Yankee slugger Lou Gehrig played in the stadium as a rookie. The Yankees will move into the new Yankee Stadium in 2009. “Lou Gehrig was a hero to his generation, and because of the film, to all the generations that have followed. He was a wonderful human being who continues to inspire,” Leo said.  “We are living in a time when we need positive role models and the story of Lou Gehrig is as relevant today as it was decades ago for the way he played the game, for the way he fought ALS and for the way he lived life in general, with class, courage and dignity.” There are high hopes that the public will line up to purchase “The Pride of the Yankees,” because many people know about Lou Gehrig and his fight against ALS and new baseball fans will find the subject matter relevant, said MGM Home Entertainment Marketing Director Chris Franchino. “It is a continuously good seller. It is always listed as one of the best sports movies of all time,” Franchino said. “It is a great film. Every collector would want it. Every Yankees fan would want it and any baseball fan would want it.” “The Pride of the Yankees” will be available in stores nationwide on March 18, according to Franchino. TOP   For more information about the Patient Sevices Department, call (800) 782-4747, send an email to the department at alsinfo@alsa-national.org or visit The Association’s Web site at www.alsa.org and click on the 'Patient, Family, Caregivers' button. TOP Questions or comments? E-mail webmaster@alsa.org or call 800-782-4747.