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Q: I’m wondering if people with ALS should get the seasonal flu and the H1N1 vaccines this year? Dr. Kasarskis: The short answer is yes. People with ALS are already at increased risk for respiratory problems associated with viral and bacterial infection, and the flu can deliver a harsh blow. I’m already seeing some people in my community with H1N1 and it causes a decreased appetite and a severe cough, both of which are significant problems for people with ALS. The H1N1 vaccine and the seasonal flu vaccine are two separate vaccines against different viruses. The H1N1 vaccine protects only against the new H1N1 influenza virus, which is the cause of swine flu. It does not protect against other strains of seasonal flu. The seasonal flu shot, which is offered every year, provides protection against an additional three common influenza viruses. Both vaccines are expected to reduce illness, limit hospitalizations, and potentially save lives. Both these vaccines can be given as a nasal spray instead of an injection. The nasal spray contains a live but weakened virus, unlike the injection, which is made of inactivated pieces of the virus. The Centers for Disease Control (CDC) recommends that patients who receive the live nasal sprays for seasonal flu and H1N1 separate the two vaccines by four weeks. So get the seasonal flu immunization as soon as you can since it’s widely available now. The H1N1 should be available in mid-October to people in high risk groups, such as people with ALS. For the H1N1, the CDC recommends that people aged 25 through 64 years who have health conditions associated with higher risk of medical complications from influenza get the vaccine. That includes everyone with ALS (since they’re also recommending people 6 months of age to 24 get the vaccine). No shortage of 2009 H1N1 vaccine is expected, but vaccine availability and demand can be unpredictable and there is some possibility that initially, the vaccine will be available in limited quantities. Anyone with an allergy to eggs should not receive the H1N1 vaccine, since chicken eggs are used in the manufacturing process. If you have a weakened immune system, you should not receive the live virus nasal spray; get the injection with the killed virus instead. The side effects of the H1N1 vaccine are similar to those associated with seasonal flu vaccine: pain at the injection site, muscle aches, headaches, and malaise (feeling run down). Rarely, patients suffer severe allergic reactions to the vaccine. Some people wonder about the downside of getting the H1N1 vaccine. Since this is a new vaccine, there are no data yet from large numbers of vaccinated people, and there is a statistical risk of adverse events that is as yet unknown. But the clear and present danger is contracting something serious that would have been preventable. Two studies recently published in the New England Journal of Medicine involved several hundred adult patients who received the vaccine who have been followed for months. Initial data was published several weeks after vaccination. No serious short-term side effects were found in any of those patients. I also recommend you get the pneumonia (Pneumococcal) vaccine to help prevent pneumococcal pneumonia, caused by the pneumoccus bacterium. There are more than 80 different types of pneumococcus bacteria, and 23 of these are covered in the current vaccination. But of the 80 different types, the vast majority of infections are caused by the 23 serotypes contained in the vaccine. You may be able to get the pneumonia vaccine at the same time you get your seasonal flu vaccine. It’s a valuable vaccine, but the seasonal flu vaccination and H1N1 should be your first priorities. For more information on the H1N1 vaccine, visit the CDC website: http://tinyurl.com/lst74s. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.Online Access to Entertainment and Education: Swift, Simple and FunWith the stresses and strains of living with ALS, it’s important to have some relaxation and diversion every day. It can be difficult to get out and about, and hard to know what you can easily access at no or low cost. But there are some terrific resources you should know about that will give you quick access online or by mail. Books: Sure, there are neighborhood libraries. But you’ve got to drive there to get the books, spend time and effort looking for something you’d like, and remember to return the books on time. Now there are online book rental services that mail you the book you want and provide a free return mailer. Most offer hundreds of thousands of books and thousands of audio books, too.
Music Education: Listen to symphony music while learning about what motivated the composers and what dramas and issues they faced. Many symphony orchestras offer free multi-media music education programs online:
Education/Courses: Interested in learning about something you’ve never pursued? Or want to dive deeper into an area you know well? Either way, there are a wide range of courses available at no cost.
Foreign Language Courses:
People with ALS Needed for a Research Study on Quality of LifeResearchers at Penn State College of Medicine are seeking participants with ALS for a research study on why individuals access a multidisciplinary clinic versus receiving traditional practitioner care. Participants will also be asked questions about quality of life and problem solving skills. The purpose of the study is to better understand the quality of life and problem solving skills of patients with ALS who attend multidisciplinary clinics versus those who do not. Participants will complete a questionnaire (online or with a paper and pencil version) that asks questions about physical health status, quality of life, social problem solving skills, and use of medical services for care of ALS. Survey responses are confidential. To access the online questionnaire, go to the Penn State Hershey ALS Clinic Website www.pennstatehershey.org/als and click on the link “ALS Patients: Click here to participate in a research survey.” For more information or to request a paper copy of the questionnaire, contact the study coordinator, Beth Stephens, at (717) 531-0003, extension 283395, or by email at hstephens1@psu.edu. The study director is Zachary Simmons, MD, Department of Neurology, Penn State College of Medicine. This research study has been approved by the Institutional Review Board, under federal regulations, at Penn State College of Medicine, Penn State Hershey Medical Center.
Neuralstem Receives FDA Approval To Begin First ALS Stem Cell TrialNeuralstem, Inc. announced that the U.S. Food and Drug Administration (FDA) has approved its Investigational New Drug (IND) application to commence a Phase I trial to treat Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease) with its spinal cord stem cells. The Rockville, MD-based Neuralstem is the first company to commence a stem cell trial to treat ALS. The trial will study the safety of Neuralstem’s cells and the surgical procedures and devices required for multiple injections of Neuralstem’s cells directly into the grey matter of the spinal cord. The FDA’s approval represents a significant step toward delivering regenerative medicine directly to damaged neural cells in humans. ALS affects roughly 30,000 people in the U.S., with about 5,600 new diagnoses per year. ALS is a progressive fatal neurodegenerative disease that affects nerve cells in the brain, leading to the degeneration and death of the motor neurons in the spinal cord that control muscle movement. “This is an extremely important trial that will test the stem cell approach in ALS in a rigorous way,” said Dr. Lucie Bruijn, senior vice president, Research and Development at The ALS Association. “This is the first stem cell trial in ALS and it will be conducted initially to study its safety for use in humans.” Neuralstem CEO and President, Richard Garr, stated, “The beginning of our clinical trial program is a major step towards achieving Neuralstem’s goal of treating ALS, a fatal neurodegenerative disease for which currently there is no effective treatment or cure. While this trial aims to primarily establish safety and feasibility data in treating ALS patients, we also hope to be able to measure a slowing down of the ALS degenerative process. This trial will be headed by Dr. Eva L. Feldman, M.D., Ph.D., director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery, and Dr. Jonathan Glass, director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, world-renowned for their study and treatment of ALS patients. We believe that there is no better team to conduct this study for us,” said Garr. Their participation is subject to formal IRB approval by their institutions. “We are very excited about this clinical trial,” Feldman said. “This is a major advancement in what still could be a long road to a new and improved treatment for ALS. Feldman also directs the A. Alfred Taubman Medical Research Institute. “In work with animals, these spinal cord stem cells both protected at-risk motor neurons and made connections to the neurons controlling muscles. We don’t want to raise expectations unduly, but we believe these stem cells could produce similar results in patients with ALS,” Dr. Feldman concluded. The ALS patients will be treated through spinal injections of its patented human neural stem cells. This first trial, which will primarily evaluate safety of the cells and the surgery procedure, will ultimately consist of 18 ALS patients with varying degrees of the disease. The FDA has approved the first stage of the trial, which consists of 12 patients who will receive five-to-ten stem cell injections in the lumbar area of the spinal cord. The patients will be examined at regular intervals post-surgery, with final review of the data to come about 24 months later. Neuralstem expects to conduct the trial at Emory University with Dr. Jonathan Glass, M.D., Director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, as site Principal Investigator (PI) and with Dr. Nicholas Boulis, M. D. performing the neurosurgery. The overall PI for the ALS trial program is Dr. Eva Feldman, M.D., Ph.D., Director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery. Neuralstem's patented technology enables, for the first time, the ability to produce neural stem cells of the human brain and spinal cord in commercial quantities, and the ability to control the differentiation of these cells into mature, physiologically relevant human neurons and glia. The company is targeting major central nervous system diseases including: Ischemic Spastic Paraplegia, Traumatic Spinal Cord Injury, Huntington’s disease and ALS. Neuralstem plans to initiate a Phase I clinical trial to treat ALS with its stem cells. Pre-clinical work has shown Neuralstem’s cells to extend the life of rats with ALS (as reported the journal TRANSPLANTATION, October 16, 2006, in collaboration with Johns Hopkins University researchers), and also reversed paralysis in rats with Ischemic Spastic Paraplegia, (as reported in NEUROSCIENCE, June 29, 2007, in collaboration with researchers at University of California San Diego).  Buffalo Bills Quarterback Trent Edwards
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“I’m pleased to partner with The ALS Association and to be part of the efforts that improve quality of life for individuals and families coping with ALS, while creating awareness and supporting research for a cure,” Edwards said.
Edwards’ passion for helping The Association fight ALS stems from his own very personal connection with the disease. While attending Los Gatos High School in Calif., Edwards played for Wedemeyer, who was diagnosed with ALS in 1977 and continues to coach today. His life story was chronicled in the PBS documentary “One More Season” and the movie “Quiet Victory: The Charlie Wedemeyer Story.” Wedemeyer is helped by the Greater Bay Area Chapter of The Association.
“Coach Wedemeyer and his wife Lucy are an inspiration to me on and off the field,” said Edwards, honorary chairperson of the chapter’s Walk to Defeat ALS fundraiser in Buffalo. “It is for them and all the people whose lives have been affected by ALS that I dedicate this program which I hope will be supported by fans of the game everywhere.”
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“This program demonstrates Trent Edwards’ commitment to his community and specifically to the fight against ALS,” said Katharine Loomis, executive director of the Upstate New York Chapter of The Association. “Each touchdown scored when Trent Edwards is in the game will help the Buffalo Bills have a successful season and give hope to people living with ALS.”
The levels of giving for “Trent’s Touchdowns for ALS” are $10 per touchdown ($100 minimum gift); $25 per touchdown ($250 minimum gift); and $50 per touchdown ($500 minimum gift). To sign up for “Trent’s Touchdowns for ALS,” call the chapter toll-free at (866) 499-7257 or visit their website at www.alsaupstateny.org.
Booz Allen Hamilton, a leading business strategy and technology consulting firm, is the recipient of The ALS Association’s inaugural Partnership for Success Award for the firm’s longtime support and involvement in the fight against Lou Gehrig’s Disease.
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"Receiving this award in recognition of the support that Booz Allen employees have provided to The ALS Association is a great honor for our firm,” said Ken Wiegand, a vice president at Booz Allen Hamilton and a member of The Association National Board of Trustees. “We are proud of our work and the efforts our employees have made to help improve the lives of people living with ALS."
A partner of The Association since 2000 after one of its employees, Craig Miller, was diagnosed with the progressive, neurodegenerative disease ALS (amyotrophic lateral sclerosis), Booz Allen Hamilton was selected as the first recipient of the award for its work in several areas that have strengthened the organization’s service to the ALS community.
Topping the list of reasons was the extensive, groundbreaking pro bono work Booz Allen Hamilton performed in raising the stature of The Association’s national signature fundraising event, the Walk to Defeat ALS®, and transforming it into a model of success that has widespread effectiveness in the effort to fund care for people with ALS and for research. Booz Allen Hamilton is a national sponsor of the Walk to Defeat ALS.
“As the chief architect of the Walk to Defeat ALS, Booz Allen Hamilton has strengthened the ability of The Association to continue caring for people with ALS and their families, and to fund global, cutting-edge research that is aggressively searching for new treatments and a cure,” said Jane H. Gilbert, president and CEO of The Association.
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“Booz Allen Hamilton set the stage for The Association’s Walk to Defeat ALS to become one of the most recognizable and successful fundraising events in the nation and for that we will forever be grateful,” Gilbert continued.
In addition to creating the successful infrastructure of the Walk to Defeat ALS, Booz Allen Hamilton designed the Walk to Defeat ALS logo, developed and printed Walk to Defeat ALS materials and provided funding for the training of chapters on how to sign up Walk to Defeat ALS participants on the Internet. The company also has made other generous financial contributions.
The Walk to Defeat ALS quickly evolved into one of the premiere fundraising events in this nation as a result of Booz Allen Hamilton,” Gilbert added. “They took a fledgling concept and built it into a brand.”
In addition to its work on the Walk to Defeat ALS, Booz Allen Hamilton reviewed The Association’s technology infrastructure in 2007 and provided recommendations for its current and future direction. The company also recently completed an extensive pro bono organizational assessment of The Association.
"Booz Allen employees have supported The ALS Association in a variety of ways over the past 10 years ranging from individuals raising funds for local Walks to Defeat ALS across the country to a pro bono organizational assessment for the national ALS Association,” said Joe Suarez, community relations director for Booz Allen Hamilton. “Our relationship with the ALS Association has been one of the firm's successful nonprofit partnerships in that it provides our employees with diverse and meaningful opportunities to give back to the communities in which we live and work."
The information compiled for the organizational assessment resulted in the adoption of a new strategic plan, a blueprint for the future that strengthens every aspect of the organization.
“We are very grateful for the time and commitment Booz Allen Hamilton has dedicated to The ALS Association to help position us to achieve our ambitious vision in the coming years,” said Allen L. Finkelstein, chairman of The Association’s National Board of Trustees. “We are truly partners in success.”
The DC/MD/VA Chapter is among the many ALS Association chapters that have flourished financially as a result of the involvement of Booz Allen Hamilton.
“Through financial, in-kind and employee support, Booz Allen Hamilton has helped our chapter grow from a $25,000 per year organization to one with an annual budget of more than $3 million,” said Ken Nicholls, executive director of the DC/MD/VA Chapter of The Association.
A common refrain heard from chapters is the reliability, accessibility and creativity of Booz Allen Hamilton.
“We have always been able to count on Booz Allen Hamilton for support and participation in the Denver Walk to Defeat ALS, even before the local office had a direct connection to the disease,” said Pam Rush-Negri, executive director of the Rocky Mountain Chapter.
The ALS Association's mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Click here to contact your local chapter, certified center or clinic.
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In honor of his well-known high school coach Charlie Wedemeyer, who has ALS, Buffalo Bills quarterback Trent Edwards will soon launch a new program that helps people with ALS and their families each time he leads his team to a touchdown.