ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, March 27, 2014

How Can I Help?

People want to help their friends, acquaintances, neighbors, co-workers dealing with ALS.  It's a fact.

ALS is a demanding disease and asking for help isn't easy.  You can't go around asking casual acquaintances to do caregiving that involves a suction machine or tush-wiping. 

There are some things that are helpful that involve no special skills or experience or awkward situations.  This is one of the reasons the multi-level marketing of walks has been so successful for fundraising.  People want to help.

Here's another way to help, and it's easy peasy.  Please ask every helpful person you know to tell the government that we need smart rules so that people with ALS have the right to speak and be heard.

So when you hear, "How can I help," you can say, "I have two easy things for you."

1. Please help the Executive Branch hear that some CMS Medicare rules taking effect April 1 just don't make sense for today's speech technology.  Did you see Steve Gleason in the Microsoft ad during the Super Bowl?  Please help make sure that kind of technology (not the world's most expensive) is available to all people who are silenced by ALS.  Click here for a link.

2. Please tell your Member of Congress and your two Senators to support HR942 and S948, with an inclusion for Speech Generating Devices, to put these devices under some rules that would be appropriate for the high tech that they are.  You can go to their websites and submit your thoughts. Elected officials actually like it when individual citizens speak to them.  Here are two links
-- http://www.senate.gov/general/contact_information/senators_cfm.cfm
-- http://www.house.gov/representatives/find/
If you can use the walk software, then you can do this!
You are welcome to use the words of Steve Gleason:

"Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others."

If we can raise millions of dollars and recruit hundreds of thousands of walkers who want to help, we can surely raise voices for the voiceless.  We just need to get all of those helpful people to help in another very easy way.

Thank you.

1 comment:

  1. The MS Society has a link set up to email your representatives here. It allows you to edit the text of the letter you send, so you can copy and paste the above statement above. Cheers.

    http://www.nationalmssociety.org/Get-Involved/Advocate-for-Change/Current-Advocacy-Issues/Complex-Rehab-Technology

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