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The ALS Association

Fighting Lou Gehrig's Disease

April 2015

Advocacy & Public Policy
 
 
Help Us Preserve Access to Speech-Generating
Devices for People with ALS
 

Losing the ability to speak is one of the most devastating aspects of the ALS disease progression. It isolates people with ALS from their families and friends, robbing the person living with ALS of the ability to communicate and stay connected.

That’s why it’s so hard to imagine that recent changes to Medicare and Medicaid have limited or denied people with ALS the right to speech generating and eye tracking devices.

You Can Help – Send a Tweet or Email to Your Members of Congress Now!

 
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Research Updates
 
 
Your Support Boosts Work of Promising Young Scientist
 

Podcast iconTune in to a podcast produced by The ALS Association Greater Philadelphia Chapter to get to know one of the most promising up and coming scientists in ALS research today. With generous support from people like you, Jill Yersak, Ph.D., is taking her work beyond the laboratory to bring hope and comfort to people with ALS. After you check out her podcast about ALS research, click here to read what inspiring new information we learned from Dr. Yersak in a follow-up interview.

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Upcoming Webinars
 
 
Research Update Webinar

Topic: Clinical Trial of Ezogabine (Retigabine) on Motor Neuron Excitability in ALS
Speaker:
Dr. Brian Wainger, Massachusetts General Hospital
Date: April 16, 2015
Time: 1:30 p.m. ET

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Care Services Webinar

Topic: Accessing Information through Social Media
Date: April 20, 2015
Time: 2 p.m. ET

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Hope & Progress
 
 
Ice Bucket Challenge to Shorten the Distance to
Clinical Care Centers for Those Living in Rural Nebraska
 
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Every few months, Ms. Kathy Colburn makes the long five-hour trek to the nearest ALS Association Certified Center where she receives the specialized care she needs to help manage her disease. It’s a long journey and one that Kathy cannot make without the assistance of family and friends.

Yet, Kathy considers herself one of the lucky ones. For some in her home state of Nebraska, the clinic located on the Iowa border is just too far and costly of a distance to reach.

There is hope for Kathy and others living with ALS.

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Resources
 
Numotion Teams Up with the ALS Association
 

In recognition of National Occupational Therapy Month in April, Numotion would like to thank occupational therapists for their valuable contributions to help bring mobility and independence to the ALS Community.

Numotion, a leading provider of Complex Rehab Technology (CRT), including customized wheelchairs, is proud to support The ALS Association and is excited to continue as a National Premiere Sponsor. In 2014, their Walk to Defeat ALS(R) teams raised over $165k, and they look forward to strengthening their partnership in 2015.

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Power Seat Elevators for Clients with ALS
 

power seat elevator allows individuals to raise and lower the seat height through the wheelchair electronics. This can help to increase vertical reach, improve transfers, and promote independence with daily activities. Individuals with ALS can find it increasingly difficult to come to a standing position from a low sitting surface. With the seat in an elevated position, less energy, strength, and assistance may be needed to come to the standing position, which prolongs independence and increases safety. Improving vertical reach becomes extremely important to the individual with ALS who may have difficulty reaching for items above the level of their shoulders. With a higher seat height, items on countertops or in medicine cabinets can be more easily reached. In addition, power seat elevation allows individuals to have eye contact with other and reduces the risk of cervical strain and pain, including headaches from poor positioning and looking upwards. Vertical rise also provides psycho-social benefits of being on peer level and speaking eye-to-eye. To learn more about power seat elevators, visit www.permobil.com.

 
  

 

 
 
VISION Express is a companion to The ALS Association's national publication, Vision Magazine. Our Winter 2015 issue is now available.

The ALS Association
1275 K Street NW, Suite 250
Washington, DC 20005
202.407.8580 | www.alsa.org

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