The National ALS Registry Newsletter- 2nd Edition

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Patient Spotlight: Darrin Altman

Darrin Altman was diagnosed with an ALS variant in 2009. Before his diagnosis, Darrin worked as a Spanish Court Interpreter and received a Master’s Degree in Spanish Linguistics.

Within a year after his ALS diagnosis, Darrin was having difficulties with his speech and began searching for an app to help him communicate. Unfortunately, the majority of the apps available were not only ineffective, but expensive. Not being able to work, living on a fixed income, and struggling to find an economic solution to assist with communication, Darrin began his quest to create a full-featured, free, text-to-speech app for not only himself, but for everyone else in a similar situation.

With zero programming experience, Darrin registered for several free online courses like Introduction to Computing Principals, Programming Methodology, Programming Abstractions, and of course, iOS Programming. After about two years of dedication and studying, and with the help of his children, Darrin made a Sight Words app. In 2015, Apple approved the first version of Talk For Me – Text to Speech, and he is now on the tenth version of the app, which is available free of charge for everyone in the app store.

Darrin says, “One of the worst things about ALS is losing independence. I have used the app on my iPad and my phone and have made all kinds of phone calls to companies and banks. It allows me to do a lot of things on my own.”

Would you or someone you know like to be featured in our next patient spotlight? registry@cdc.gov

More Than Counting Cases

What do Brainstorm Cell Therapeutics, Cytokinetics, Orphazyme, Amylyx Pharmaceuticals, and Massachusetts General Hospital have in common? They have all used the National ALS Registry’s notification tool to help recruit for their respective clinical trials. These trials are looking to halt, reverse, and possibly cure ALS.

The National ALS Registry has helped recruit over 1,000 patients for over 40 clinical trials and epidemiological studies.

Click here to learn more about research studies contributing to the National ALS Registry and other clinical trials.

The National ALS Registry Webinar- Coming soon

(For Partner Organizations)

The National ALS Registry program is hosting an informative LIVE WEBINAR to improve your important contribution to the National ALS Registry. Topics include a better understanding of the Registry, its research contributions, and the upcoming redesigned ALS website.

Please join us on June 19th at 12pm Save the dates will be sent soon electronically.