The ALS Association, Greater Sacramento Chapter November 2012 ...

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Recent Research Updates on Two Clinical Trials: NP001 Phase III and Tirasemtiv Phase IIb On October 30, Neuraltus Pharmaceuticals announced that it is planning a Phase III clinical program to continue to study of its drug, NP001, in people with ALS. According to the company, its Phase II clinical study demonstrated positive trends in slowing the rate of disease progression, and NP001 was found to be safe and welltolerated. The data will be presented at the 23rd International Symposium on ALS/MND in Chicago this December. On October 29, Cytokinetics, Incorporated, announced a Phase IIb clinical trial to continue studying it drug, tirasemtiv, formerly known as CK-2017357, in people with ALS. It has opened BENEFIT-ALS (Blinded Evaluation of Neuromusclar Effects and Functional Improvement with Tirasemtiv in ALS), formerly known as CY 4026, to enrollment.Click here to read the full article. ALS Association-funded Study Identifies Potential Therapeutic Target in RNA Enzyme A new study funded in part by The ALS Association has revealed a potential new target for therapy to treat amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease. This study, published in Nature Genetics on October 28, shows that lowering the level of a cellular enzyme reduces the disease-causing activity of a major ALS-related protein called TDP-43. Most people with ALS develop clumps of excess TDP-43 protein within their motor neurons, nerve cells that control movement. The protein clumps, or aggregates, are believed to be toxic to the neurons, through unknown mechanisms. ALS occurs when motor neurons die.Click here to read the full article. ALS Researchers Honored by Institute of Medicine The ALS Association congratulates Don Cleveland, Ph.D., and Tom Maniatis, Ph.D., on their recent election to the Institute of Medicine (IOM). Election to the IOM is in recognition of outstanding professional achievement and commitment to service and is one of the highest honors in the fields of medical science. “The recognition of these two scientists by the Institute of Medicine highlights the importance of their research in neurodegenerative disease in general, and ALS in particular. We are grateful that these distinguished researchers have chosen this field as the focus of their efforts,” said ALS Association Chief Scientist, Lucie Bruijn, Ph.D.Click here to read the full article. C9orf72 Symposium Highlights New Ideas in Understanding and Treating ALS and FTD The discovery of the C9orf72 gene is perhaps the most exciting discovery in ALS in the last 20 years, according to researchers hard at work to understand how the gene causes ALS and a related disorder, frontotemporal dementia (FTD). To maximize the growing understanding of the gene among the widest possible group of scientists, The ALS Association partnered with The Association for FTD to sponsor a symposium in New Orleans at the annual meeting of the Society for Neuroscience, the world’s largest assembly of neuroscientists. “It is an exciting time for ALS and FTD research, and there are many new questions that are now going to emerge as we begin to explore this gene,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D. That excitement was shared by the 170 investigators attending the symposium, many of whom are just joining the field, including established academic investigators, post-doctoral fellows, representatives from industry and clinicians.Click here to read the full article. 4
2012 Veterans Day 2012 Veterans Day Awareness Campaign Veterans Day is November 11 and The ALS Association once again is launching a national campaign to raise public awareness of our military heroes fighting ALS and those who have been lost to the disease. During this campaign, we will deliver key messages about the connection between ALS and military service -- messages that draw attention to this disease and which can generate support for our cause. An overview of the campaign is provided below. However, we encourage you to participate in the campaign in as many ways as you can, including by uploading veterans' stories and photos to the "Wall of Honor" and by sending a letter-to-the-editor of your local newspaper or simply forwarding our updates, alerts, and social media posts to friends, family and colleagues. Your efforts can make a difference not only for our veterans, but for everyone whose life has been touched by ALS. Key Activities: Wall of Honor: Go to our website and visit the "Wall of Honor." This visual tribute recognizes our military heroes with ALS as well as those veterans we already have lost to the disease. The Wall includes scrolling photographs of veterans from across the country to help put a face on the disease and its impact on veterans. The Wall is searchable by state and branch of service, and veterans and family members can upload photos to the Wall and share their ALS story. Uploading a photo and story is easy. Simply click the link, Share Your Story, which can be found on the Wall, and follow the instructions on the website. If you are a veteran or know a veteran with ALS, we encourage you to spread the word and to join the Wall today! We also encourage family members or friends to share the photos and stories of veterans with ALS who have been lost to the disease. Video: Videos featured on our website highlight the connection between ALS and military service and also provide information about the services available to veterans, their families and survivors, including vital benefits available from the VA. Letters-to-the-Editor: The Association once again will make available sample letters-to-the-editor prior to Veterans Day that individuals can easily send to their local newspapers via the Advocacy Action Center of The ALS Association's website. We encourage you to participate in this campaign and spread the word. By doing so, you not only raise awareness and support for our military heroes, but for all people living with ALS and their families. This November consider making a donation to The ALS Association, Greater Sacramento Chapter in honor of a special caregiver or Veteran. Visit www.alssac.org to make a gift today. 5
Page 1 and 2: NOVEMBER 2012 Dear Friend, The ALS
Page 3: A Letter From Our PALS - Lauren Spe
Page 7 and 8: Information & Resources for Patient
Page 9 and 10: Ask the Doc: Q & A with Edward Kasa
Page 12 and 13: Patient Interview: Cathy Speck on K
Page 14 and 15: October Donations. Making a Differe
Page 16: Thank you to our October Donors. Ka

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