James E. Muse (Eddie)
Eddie’s sister Trudy reached out to us on behalf of her brother, Eddie:
“My brother was diagnosed with ALS in Feb. 2011. His condition deteriorated quickly to the point that he was Trached and on a Ventilator within weeks. Today, he lives with our Mom in Kentwood, LA and has round the clock Nurses which he is paying for out of his own funds. Totally paralyzed, he quickly became interested in the latest technological advances of communication. He originally received a Dynavox and soon found it was not what he expected. After researching and having a demonstrated, he just received an EyeTech Model TM4 Mini. Interested in preserving his funds for his long-term nursing care, he has asked me to see if there are funds/grants, etc. available through Team Gleason that may reimburse all or at least partially reimburse this costly device.
He would love to be able to visit Steve and his tech team to share his expertise and thoughts on the technology that can make ALS patients lives much more meaningful right now and allow them to participating in many of the normal day to day things that they enjoyed pre-ALS….with family and friends, etc. ”
The more we read about Eddie, the more we realized how we admired his proactive lifestyle, his willingness to live and be productive AND how tech savvy he is…
So, with the money raised for The Gleason Initiative Foundation, we were able to reimburse him for the TM4 Mini. We have also welcomed him aboard our technology team and look forward to working with him to help learn about and perfect assistive technology.
From Trudy post reimbursement:)
Thanks so much! Eddie is very thankful for the reimbursement and excited as heck about the projects! We honestly haven’t seen him this positive and excited since diagnosis! Hoping for some great things for ALS patients moving forward!
Here are Eddie and Trudy, clad in Team Gleason merch.
