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November

Newsletter Month

Ask the Doc: People with ALS and the seasonal flu and the H1N1 vaccines

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.

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 Progress

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.

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
President/CEO

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ALS Researcher Lisa S. Krivickas Passes Away of ALS

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): 
http://

Catfish Classic 2009 Raises Close to $60,000!

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): 
http://

The ALS Association Fights for Veterans

Honoring our Veterans Video
As the leading organization advocating for military veterans with Lou Gehrig’s Disease, The ALS Association has produced a video to honor their service and pay tribute to the heroes we have lost in the war against ALS.  The video captures the emotion of a wreath laying ceremony The Association held at Arlington National Cemetery during the 2009 National ALS Advocacy Day and Public Policy Conference in Washington, DC.
The video is available on The Association's official YouTube channel, http://www.youtube.com/thealsassociation (note that you may need the latest version of Adobe Flash player to view the video).

Veterans Website
The ALS Association has created a special Veterans section of our website, http://www.alsa.org/policy/veterans.cfm, that includes important resources for veterans with ALS, their families, caregivers and survivors. The site has answers to frequently asked questions about regulations implemented in 2008 that provide historic new benefits to veterans with ALS.  In addition to health care and monthly disability compensation, benefits also include grants for adaptive housing, the purchase of an accessible vehicle and education assistance to name a few.  Importantly, benefits and compensation also are available for the survivors of veterans who have been lost to ALS.

New Antisense Experimental Therapy Clinical Trial Announced

News Type: 
Research

Treat LogoA new experimental therapy using an approach known as antisense, in which a drug is designed to shut down the RNA (Ribonucleic acid) that is responsible for the production of disease-causing proteins, is being prepared for a clinical trial in people with a familial form of ALS later this year. The clinical trial follows research funded by The ALS Association through TREAT ALS (Translational Research Advancing Therapy for ALS), our research pipeline that funds and facilitates the development of treatments for ALS based on important laboratory findings.

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 Website

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): 
http://

First FDA-Approved ALS Stem Cell Trial to Begin

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): 
http://
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