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The registry, called fALS Connect, is for people with familial ALS and has the goal of hastening research progress in this disease
Posted on Friday, October 7, 2011 - 06:00, By: Amy Madsen
A new registry has been launched for people with the familial (inherited) form of amyotrophic lateral sclerosis (ALS). The Web-based fALS Connect registry was developed by a research team from the University of Miami Miller School of Medicine in Florida.
The team aims to connect families affected...
Officials encourage everyone with ALS, especially those newly diagnosed, to enroll and complete all surveys
Posted on Thursday, July 14, 2011 - 11:24, By: Miriam Davidson
In hopes of collecting as much information as possible, the National ALS Registry, which opened in October 2010, already is expanding its reach.
Registry officials have made the enrollment process easier and are adding surveys about potential risk factors to the registry’s website.
Posted on Saturday, January 1, 2011 - 01:01, By: ALSN Staff
Using an alternative augmentative communication device, or AAC, is a wonderful way to keep talking when ALS tries to silence you. But AAC usage is new to many potential conversation partners, and they may not know how to react. These tips, based on recommendations from AAC users, can be...
Posted on Monday, November 1, 2010 - 15:05, By: ALSN Staff
In order to help doctors and scientists find treatments for ALS, the Agency for Toxic Substances and Disease Registry (ATSDR) has developed a national registry to collect information from people living with the disease. Here is a bit of background on the new registry, which opened in October.
Posted on Thursday, July 1, 2010 - 15:06, By: ALSN Staff
MDA hosted three ALS-related webinars (Internet-based seminars) in May, in conjunction with National ALS Awareness Month. These webinars, which allow participants to direct questions to the featured experts, are archived on the MDA website.
Posted on Saturday, May 1, 2010 - 14:09, By: Miriam Davidson
How many times in your journey with ALS have you heard someone say, “Let me know if there’s anything I can do to help?”
“Thanks, I will,” is usually the response, but then no one follows up. Family and friends may be sincere and well-meaning in their offers of help, but they don’t realize how hard...
Posted on Friday, January 1, 2010 - 11:27, By: ALSN Staff
In the journey with ALS, a good support network is essential. Friends, family and willing volunteers make life easier and sweeter in so many ways.
But coordinating such a network can seem like one more job on an overflowing “to do” list. It takes time and effort to keep people...