TAKE THE CHALLENGE !!!
Unless you've been on vacation in Uzbekibekistan for the month of August, you are all familiar with the Ice Bucket Challenge. If you have accepted and made a donation, THANK YOU! If you haven't been Challenged, I hereby challenge you to take the Challenge. To accept, either donate $100 to the 2014 WALK4LIVING or post a video of yourself dumping a bucket of ice water over your head and still donate $10 for every person you nominate (usually 2 or 3 but if you have a long list, go for it). Ask the people you nominate to follow the same rules. You have 24 hours...
The ALS Residence in Chelsea (Boston) is the 1st long term care facility in the world specifically designed people living with ALS (pALS). The pALS residents, as well as those with MS, have access to all of the technology required to survive ALS for the rest of their life with the highest level of mobility and independence possible. ALS does not have to be fatal anymore. Support the 2014 WALK4LIVING to show your support for the home of the ALS Residence Initiative. We will not stop until such specialized care is available everywhere. It is about time that pALS were brought into the 21st century.
Speaking of Technology...
Perhaps the most important piece of technology responsible for transforming the lives of pALS is the portable computer. Medicare has covered a speech generating device (SGD) and since 2001, pALS have been able to upgrade these SGDs, at their own expense, to allow all of the features of the normal computer with the same eyegaze technology they use to speak. As of September 1, 2014, Medicare prohibits a person with ALS (and many others) from upgrading their device with their own money to do anything other than speak to the people in the same room. No more internet. No more email. Not even the ability to compose a letter to protest the rule change. The new rule doesn't save the taxpayer any money. They are just restricting functionality of a device that opens the world for a person trapped in a shell of a body. Please contact the new HHS Secretary Sylvia Burwell and your Senators & Rep to tell them this cannot stand. Click the image to the left for an easy way to do that. THANK YOU!