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The ALS Association
Vision Express

 

 
 
  01. Letter from the President
  02. Advocacy & Public Policy
  03. Research Updates
  04. How You Can Help

 

 
 
 

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Letter from the President

A New Year = New Opportunities

videoIt's a new year and with that comes renewed hope for those living with ALS. Now is a great opportunity to take the fight against ALS to the next level by supporting The Association even more in 2014.

There are so many ways you can make a difference. Whether you participate in our next Walk to Defeat ALS® event, volunteer or become an ALS advocate, your actions will make a significant impact in the coming year.

You may have seen our list of 90 ways you can further support with The ALS Association. If you have not, please download this useful resource and make a personal commitment to try something new this year. No matter how large or small, your actions matter to those living with this disease.

I know that you are doing everything you can to help create a world without ALS. I hope these suggestions open new doors of possibilities for you. We all share the common goal of a cure for Lou Gehrig’s Disease, and there are many paths to making that goal a reality. Thank you for everything you do.

I wish you and your family a very happy New Year.

Sincerely,

9-28-10 Match Email 2 Signature

Jane H. Gilbert
President & CEO

 

Advocacy & Public Policy

New Surveys Added to National ALS Registry

New online risk factor surveys have been added to the National ALS Registry. The new surveys include a survey on clinical symptoms and an open-ended comment survey. The clinical symptoms survey asks questions related the onset of disease. The open-ended comment survey gives PALS a chance to share what they think may have contributed to their disease.

No one knows what causes most cases of ALS. Science has yet to find a cure for the disease. The National ALS Registry collects information on people with ALS. Information in the Registry is being used to increase our understanding of who gets ALS and what factors affect ALS. The data in the Registry may help researchers and scientists as they seek the causes of ALS.

To learn more about the National ALS Registry, please visit www.cdc.gov/als.

Save the Date: 2014 National ALS Advocacy Day
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Research updates

Two New Awards Will Help Develop New Therapies for ALS

As part of its Translational Research Advancing Therapy (TREAT ALS) program, The ALS Association is pleased to announce two new awards that will contribute to the development of new treatments for ALS.

The Association awarded $48,000 to Bjorn Oskarsson, M.D., Director of the ALS clinic at the University of California at Davis, to support a trial of the drug mexiletine for treatment of muscle cramps. Muscle cramps are a common problem in the disease, affecting more than three-quarters of people with ALS.

The Association also awarded $140,000 to Rita Sattler, Ph.D., of Johns Hopkins University in Baltimore and John Gerdes, Ph.D., of the University of Montana at Missoula to fund further development of a PET imaging marker for the glutamate transporter. The transporter helps reduce potentially toxic glutamate in the brain and spinal cord. Read more about these two new awards.

Discovery of Immune Cell's Molecular Signature Likely to Speed Therapy Development for People Living with ALS

In a study published in the scientific journal Nature Neuroscience and supported by The ALS Association, researchers have for the first time identified a unique molecular “signature” for a type of immune cell in the brain and spinal cord believed to contribute to ALS.

The researchers investigated ways to distinguish cells called microglia, which reside in the brain and spinal cord, from other immune cells that migrate in during the ALS disease process. Under certain conditions, microglia are thought to accelerate ALS by contributing to “neuroinflammation,” an inflammatory process that contributes to the loss of motor neurons.  View details.

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How You Can Help

Keeping A New Year’s Resolution

Here is a New Year’s resolution that you can feel good about keeping that will take care of you and your loved ones. At this time of year we all make resolutions which may be a challenge to keep despite all our good intentions. Take some time now to make sure you have these key documents in place and up to date, in case it becomes necessary for another person to act on your behalf or in the event of your death. 

  1. An Advance Medical Directive
    This document outlines what kind of care you want to have if you are unable to make medical decisions for yourself. 

  2. A Durable Healthcare Power of Attorney
    A healthcare power of attorney appoints someone to consider your medical circumstances and make health care decisions for you according to your wishes.

  3. A Durable Financial Power of Attorney
    A financial power of attorney appoints someone to make financial decisions for you if you are unable to make them yourself.

  4.  A Will
    A will directs the distribution of your assets after your death and is an opportunity to communicate a heartfelt remembrance. A will can serve as a loving testament to the people and causes you care about. If fighting ALS is important to you, a bequest to The Association is one of the easiest and most popular ways to help fund our work to eradicate this devastating disease.

Once you have these documents, be sure to keep them in a safe place and advise loved ones of their location. Then you can rest easy knowing you are well prepared.

Please feel free to contact us if you have any questions.

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Vision Express is a companion to The ALS Association's national publication, Vision Magazine.

The ALS Association
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Phone (202) 407-8580     www.alsa.org
 

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