2009Newsletter Year Ask the Doc: People with ALS and the seasonal flu and the H1N1 vaccinesTue, 11/10/2009 - 3:30pm — mcormican
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. New Opportunity to Make Great ProgressThu, 10/29/2009 - 11:28am — catfishadministr8r
We have a new Retail Pin-up Sales program that has enormous potential to raise funds for research and services. We are actively searching for restaurant chains, grocery stores, pharmacies and convenience stores to partner with us by running the campaign for one month. If you or someone you know might be able to help us set up a meeting with a potential partner please contact us through this page on our website or call toll free 1-877-568-4347. Thank you for your support of our efforts to eradicate ALS and provide for those struggling with the disease. Together for a treatment, cure and improved care, JERRY DAWSON <!--Session data--> ALS Researcher Lisa S. Krivickas Passes Away of ALSThu, 10/29/2009 - 9:07am — mcormican
News Type:
Research
Lisa S. Krivickas, M.D. has passed away of amyotrophic lateral sclerosis. A member of the Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS), Dr. Krivickas held appointments at Spaulding Rehabilitation Hospital, Massachusetts General Hospital, and Brigham and Women's Hospital. Dr. Krivickas dedicated her clinical career to the care of patients with neuromuscular diseases, including ALS. Her research aimed to increase the understanding of muscle function and dysfunction in neuromuscular disease at multiple levels. One of her main interests was the search for pharmacologic treatments for neuromuscular disease. External URL (if applicable):
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Catfish Classic 2009 Raises Close to $60,000!Tue, 10/20/2009 - 2:00am — amurphy
News Type:
General
A beautiful, chilly morning welcomed golfers to the 2009 Catfish Classic. Over 80 people participated in the 5th annual golf tournament which rose close to $60,000 for the Jim “Catfish” Hunter Chapter of The ALS Association. External URL (if applicable):
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The ALS Association Fights for VeteransSun, 10/18/2009 - 9:40am — mcormican
Honoring our Veterans Video Veterans Website Ask the Doc: People with ALS and the seasonal flu and the H1N1 vaccinesSat, 10/17/2009 - 3:31pm — mcormican
News Type:
General
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. External URL (if applicable):
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New Antisense Experimental Therapy Clinical Trial AnnouncedThu, 10/15/2009 - 8:59am — Anonymous
News Type:
Research
The research that resulted in the identification of this antisense drug was first funded by The ALS Association in 2003, and has been developed for the clinic through an academic/industry partnership. ALS Association-funded researchers Drs. Don Cleveland, Richard Smith and Timothy Miller, in partnership with Isis Pharmaceuticals in Carlsbad, Calif., initiated experiments in a rat model of ALS to determine whether reducing the amount of SOD1 protein may be beneficial in treating the disease. CDC/ATSDR Launch ALS Registry WebsiteThu, 10/08/2009 - 4:31pm — mcormican
News Type:
Advocacy
On October 8, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) launched the National ALS Registry website. This is the first phase of building a website that later will include an online portal where people with ALS can enroll in the ALS Registry. In this initial phase, the ATSDR will provide up-to-date information about the registry, including answers to frequently asked questions such as who can enroll in the registry, whether enrollment is mandatory, and who will have access to the registry. The site also will include helpful information about the disease itself, including links to information about ALS research and clinical trials as well as to organizations, like The ALS Association, that provide assistance and support to people with ALS and their families. External URL (if applicable):
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First FDA-Approved ALS Stem Cell Trial to BeginTue, 09/22/2009 - 1:56pm — jdawson
News Type:
Research
The U.S. Food and Drug Administration (FDA) has approved a Phase I trial aimed at treating ALS with spinal cord stem cells. Neuralstem, Inc., based in Rockville, Maryland, will launch the trial and will study the safety of Neuralstem’s cells, as well as the procedures required for multiple injections of the cells directly into the gray matter of the spinal cord. The FDA’s approval represents a significant step toward delivering regenerative medicine directly to damaged neural cells in humans. External URL (if applicable):
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Note that all information on this website, while accurate and up-to-date to the best of our knowledge, is subject to change. |
Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 
Dec 24 - Dec 26 Christmas-Closed
Mar 27 Down East Walk
We are nearing the end of what has been a difficult year for our Chapter. The economy has taken its toll and we are doing all we can to keep our programs and services intact. So far we have been able to honor every completed grant request this year. We hope our future fundraising events and efforts are successful so that we will never be in the position of making difficult choices.
A new experimental therapy using an approach known as antisense, in which a drug is designed to shut down the RNA (