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The ALS Association

Fighting Lou Gehrig's Disease

April 2014

Honoring Volunteers and All They
Do During National Volunteer Month!


Dear Member,


Throughout April, which is National Volunteer Month, millions of Americans will donate their time and talents to a multitude of worthy causes across the country. The ALS Association acknowledges the special individuals who enhance the lives of people with ALS this month and throughout the year.

The Association has received support from many caring individuals who have worked with us over the years. These dedicated men and women participate in a variety of activities, such as attending and raising funds for our annual Walk to Defeat ALS® events, meeting with legislators in our nation’s capital for the National ALS Advocacy Day and Public Policy Conference, and hosting activities that help us move closer to finding treatments and a cure for ALS.


In This Issue

Featured Story
Advocacy & Public Policy
Research Updates
Upcoming Webinars
How You Can Help

Aside from informing their fellow citizens about how The Association works with families living with Lou Gehrig’s Disease, people can volunteer with our national office or chapters in multiple ways. These include yet are not limited to performing data entry-related tasks at our chapter offices and disseminating information about ALS and The Association and its services while working at community event booths.

Please click here if you are interested in a volunteer opportunity. Thank you for your unwavering support.

Jane H. Gilbert
President & CEO
Featured Story
Respiratory Video Series


Respiratory Decisions in ALS is a new series of educational videos that guide families through the process of evaluating and making important decisions about respiratory care as the disease progresses. You can order the videos or watch them online on our website. 
Advocacy & Public Policy
Medicare Coverage for Speech Generating Devices
On April 1, the Centers for Medicare and Medicaid Services (CMS) changed the manner in which it pays for speech generating devices (SGDs). Under the change, called “capped rental,” people with ALS on Medicare who need SGDs will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how the vast majority of people with ALS on Medicare obtained SGDs. The payment system change does not apply to anyone on Medicare who currently owns an SGD. Capped rental also does not affect which devices Medicare will cover, or the evaluation and documentation required to support Medicare coverage.

While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Details are outlined on our webiste.
Research Updates
New Gene Places Emphasis on RNA Processing
Researchers supported by The ALS Association have discovered a new ALS-causing gene and have linked its function to that of another prominent disease gene. The study was published in the journal Nature Neuroscience.

Mutations in the gene, called MATR3, were discovered in a family with members who were affected by both ALS and dementia. These investigators subsequently identified similar mutations in an additional family, out of 108 familial cases tested. It was also found in one individual with sporadic ALS, out of 96 people tested. Read the full article.
New Technique Generates ALS-Derived Muscle for Study
Scientists have developed a new method for generating muscle cells from skin tissue of people with ALS. “The ability to generate muscle cells from ALS-related tissue is important, because we need to understand more about the role of muscle in the disease process,” said Lucie Bruijn, Ph.D., MBA, Chief Scientist for The Association. Click here for more details.
Upcoming Webinars
Care Services Webinar
Topic: Funding for AAC Devices: Insurance Benefit or Consumer Devices
Date: Monday, April 21, 2014
Time: 2 p.m. ET
Session number: 823 004 199
Session password: ATCapr2014
Research Update Webinar
Topic: Using the Canine Model to Develop Therapies for ALS
Date: Tuesday, April 22, 2014
Time: 4 p.m. ET
What You Can Do To Help
Leaving a Legacy of Hope


Including The ALS Association as part of your personal legacy by making a planned gift can feel like a big step. To address some of the concerns you might have, we’ve put together a little question and answer session.


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

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