Hear from our Patients


JULY 2022

Healthbeat: New ALS research driven by patient-focused non-profit

SCRANTON, LACKAWANNA COUNTY— New research is underway to better understand and treat ALS, a difficult disease to diagnose with no known cure. ALS patient Paul Miller of Scranton is one of the participants.

The progressive neurodegenerative disease ALS affects as many as 30,000 Americans. There is no known cure despite efforts to better understand it and treat it.

ALS is a puzzling disease for certain with so much needing to be learned about it.



JULY 2022

Bentonville man works to help diagnose ALS sooner

 A Bentonville man is dedicating his life to advocating for people with ALS and trying to help diagnose the disease sooner.

“I’m a movie connoisseur,” said Tommy Edward Culpepper, Jr. “I love movies.”

For Culpepper, movies have always been his saving grace. Even when he was a kid growing up in St. Louis, Missouri.

“I grew up in the Peabody Projects and the home environment wasn’t the greatest,” he said. “Star Wars, Blade Runner, Highlander. Movies like that are excellent getaways for me.”

Until he found himself in a nightmare that started in the doctor’s office...


JULY 2022

These 2 Surprising Traits May Predict ALS, New Research Says

How ALS researchers are using an intriguing tool to learn keys of this disease that has at times taken years to diagnose. Plus, one woman's story of why she agreed to participate in this research

Amyotrophic lateral sclerosis (sometimes called Lou Gherig’s disease, or ALS) affects around 15,000 Americans, with about 5,000 receiving a new diagnosis each year, according to the Centers for Disease Control and Prevention.


MAY 2022

Patients giving voice to ALS research

Back in 2014, millions of people poured icy water over their heads to spread ALS awareness and support research for the devastating neurodegenerative disease.

Now tech developers want to hear your voices. 

Brian Andre has been living with ALS for six years.

“On average they only give you 2 to 5 years of life after diagnosis and some progress very quickly,” he said. “I’m really in a very small percentage of patients who see little or no progression. … My weakness is in my left side, left leg and arm. So it throws my gait off.”


Austen Eadie-Friedmann before his diagnosis of amyotrophic lateral sclerosis or ALS

MAY 2022

A Connecticut man is battling a fatal disease with ‘enormous courage’. Love and his work with an ALS group give him ‘purpose

Three years ago Austen Eadie-Friedmann, 38, had a dynamic career in the pharmaceutical/biotech field working for a Fortune 500 company and living in exciting places such as New York City, Boston and Europe, with his husband, William DeGregorio.

The couple, now together for 18 years and married for five, loved their life traveling the world, sharing a passion for art.

Then the devastating diagnosis arrived...