The National ALS Registry Newsletter- 4th Edition February 2020

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Patient Spotlight: Ron Faretra

Mr. Ron Faretra was diagnosed with ALS in January 2017. As with many ALS patients, Ron was in the military for 27 years. He spent the first 21 years as an aircrew member on a cargo aircraft, where he logged nearly 9,000 flying hours.

Nowadays, you can find Ron splashing in water aerobics class. As a true water aerobics enthusiast, he claims, “I had a friend that had lost her mother to ALS many years ago; she talked me into doing water aerobics as soon as I retired. I will be eternally grateful for her suggestion, and I am convinced that it is why I can still use my legs. I do water aerobics two hours a day, five days a week, at a city pool. I am trying to convince other newly diagnosed ALS patients to start water aerobics because I believe the water is magic!”

Due to the slow progression of the disease, Mr. Faretra considers himself a very fortunate ALS patient. Ron said, “I am able to walk very short distances with the use of a cane and for longer walks, like shopping, I use a walker.” Because of the slow progression of his ALS, Ron hopes to remain as active as possible by continuing to partake in his daily routine. “I believe that attitude is also a great healer,” Ron explained. “My father died when he was 54 years old. I am almost 72 years old and have been able to spend almost 18 years with my children and grandchildren—that’s something my Dad never had the chance to do.”

Currently, Ron is a reading tutor at an elementary school and also attends ALS support group meetings any chance that he gets. Ron said, “I encourage all ALS patients to attend support group meetings. They have been very informative since it gives me the ability to talk to other patients and learn from them.”

Thank you, Ron, for sharing your story with us.
Would you or someone you know like to be featured in our next patient spotlight?


ALS Funding Opportunity Announcement


Are you interested in ALS research? Do you want to help find answers to ALS? Explore the opportunity for a research grant.

ATSDR is soliciting investigator-initiated research that will further the understanding of potential risk factors for ALS while supporting the National ALS Registry’s mission.

More information on this grant opportunity can be found here.

The deadline to apply is March 4, 2020.


Introducing the NEW National ALS Registry Website
It’s here! We are proud to announce the launch of our user-friendly website that includes easier navigation and a more logical flow. This new website gives users the ability to find what they’re searching for in the shortest amount of time.

This mobile-friendly website is also available on smartphones, tablets, and other mobile devices. We have redesigned it with you in mind. There’s a section portal for patients and caregivers, researchers and clinicians, partners, and the general public.

We encourage everyone to visit and explore the site, discover all of the Registry resources, and use the most updated and relevant information.

Click here to start browsing!


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