Mouse Gene Map May Help ALS Research

In an article titled “Gene map charts spinal cord mysteries” in the Health section of the msnbc website written by science editor, Alan Boyle it is revealed that an online atlas of genes linked to spinal cord functions in mice may shed some light for research into new treatments for diseases like ALS. Paul Allen, Microsoft billionaire and other contributors backed the “Allen Spinal Cord Atlas” whose first pages were unveiled recently.

When the full data is revealed it will provide a valuable resource.

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It's Official! Victory on Power Chairs and Medicare Coverage

It’s official! After more than two years of outreach to Congress, we can declare victory in the fight to ensure access to power wheelchairs. Last night Congress voted to override the President’s veto of Medicare legislation that would exclude high-end power wheelchairs from Medicare’s competitive bidding program. This victory means that people with ALS and our Chapters no longer need to worry that competitive bidding will limit the types of chairs available to PALS or reduce access to needed services and suppliers. The bill is now law!

Key Provisions also Included

In addition to competitive bidding, the bill enacted into law includes a number of other critical provisions important to people with ALS and which the Advocacy Department promoted with Members of Congress. These provisions provide important protections to people with ALS, improve coverage for prescription drugs under the Medicare program and help ensure access to other critical Medicare benefits, like physical therapy. The key provisions of the Medicare Improvements for Patients and Providers Act (HR 6331) include:

  • Ensures Access to Power Wheelchairs

  • Improves Medicare Prescription Drug Coverage

  • Provides Additional Coverage for Physical Therapy, Occupational Therapy and Speech Language Pathology Services

  • Improves Access to the Medicare Savings Program (MSP)

Additional details on these provisions is available by clicking this link.

We would like to again thank advocates across the country for reaching out to Congress and educating them about the unique needs of people with ALS. The overwhelming vote, 70-26 in the Senate and 383-41 in the House, is a testament to the effectiveness of your outreach and our strategic efforts to enact this important legislation.

If you have any questions or would like additional information about this important victory, please contact the Advocacy Department at mohsinger@als-ny.org.

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Indestructible Documentary Follows ALS Patient's Fight

The Chicago Tribune gave Ben Beyer’s film “Indestructible” 3 1/2 stars today. The movie about Beyer’s fight against ALS (which he lost on July 3,2008, when he passed away) captures three years of his struggle.

In a movie review on the Chicago Tribune website, reporter, Maureen Hart said that Beyer’s fighting spirit survives because of his documentary.

You can read the full review of the film here.

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2008 ALS Advocacy Day

ALS Association of Greater New York met with Legislators During the National Advocacy Conference in WashingtonD.C.

On May, 2008, the ALS Association of Greater New York sought support of legislators in WashingtonD.C. for proposed bills establishing a national registry and appropriation of funds toward research. Also on the agenda was securing government benefits for veterans afflicted with the disease as they run a higher risk of contracting ALS, especially 1991 Gulf War service persons, according to recent studies.

Read all about it here.

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