'Ice Bucket Challenge' paying off for ALS research

- Just a few years ago, all the rage was to dump ice on your head to help raise money for researching ALS, also known as Lou Gehrig's Disease. The Ice Bucket Challenge raised $114 million in only an eight-week period. 

Four new genes were discovered because of that funded research. That information will hopefully help identify new forms of therapy. A researcher from Houston Methodist Hospital, who has spent his entire career trying to find a cure for ALS, was able to conduct additional research with some of those funds. Larry Bradley, an ALS patient, was the very first person to join that researcher's study.

While Larry may have lost his physical voice because of ALS, he refuses to let that silence him. He uses a system that reads his "eye movements" to type, and now a computer speaks on his behalf.  

"Living with Lou Gehrig's disease, commonly known as ALS, is terribly difficult," describes Larry, using the technology. "It takes your arms, hands, legs, speech, and your breathing.  For most ALS patients like me, it doesn't affect your mind. I guess the best way to describe ALS is that you are a prisoner in your own mind, dropped in a useless body.

Larry and his wife, Sharon, reached out to Dr. Stanley Appel at Houston Methodist Hospital, when they found out he was about to undertake a huge new project, testing immunotherapy to fight ALS.  

"We had to ask them, 'Do you understand, this is not a treatment? It's a study and it could make you worse. Do you know you are pioneers, the first to go to the moon, the first to plant the flag in Iwo Jima, but you're going to help us and help yourself hopefully.' Their comment: 'We hope we can help others,' which is an incredible story," explains Dr. Appel. He had noticed his ALS patients all had low levels and dysfunctional cells that control the immune system, called "regulatory T-cells." 

Dr. Appel believes that improving the function of those cells, along with increasing the amount of them, could slow down the progression of ALS. Larry agreed to be the first to try it.

Houston Methodist Hospital shared a video from 2015 when Larry could still talk with his own voice.  

"Being the first person in this trial, I was extremely excited!," said Larry with a smile in that video. "For me, it was an opportunity I think happened for a reason and I think it was an opportunity for me to find answers, whether it was one way or the other. I fully accept that! If not me, then who? My wife has taught me that."

Larry underwent a simple procedure, similar to donating blood, where his regulatory T-cells were removed, expanded in a lab and made normal again, then given back to him through an IV.  

"It stabilized disease," explains Dr. Appel. "It was incredible! But when we stopped, the patients deteriorated, we went back in and got FDA approval to do this again." In phase two, they'll do the infusions monthly for at least a year!

Larry and Sharon hope that they may have played a role in helping Dr. Appel create the first treatment EVER to help the quality of life of ALS patients.  

"He was able to halt my progression during the study, although I don't qualify for phase two, I feel that this study will be a game changer down the road for ALS patients" explains Larry through the computer system. "I really think Dr. Appel is up to something big."

Larry's first symptoms started as twitches in both of his arms in 2015 — something so simple that ended with a devastating and terminal diagnosis.  

"He hasn't had anything but a smile on his face since day two," describes Sharon. "Day one, he says he had a talk with God, he had his discussions about the future, and he decided he could live with this positively."

"ALS has affected my life in every aspect," says Larry. "All of my hopes, dreams, goals, and retirement plans changed overnight. Now, I keep living life to the fullest each and every day.  You see, I have ALS, but ALS doesn't have me. I have God in my pocket."

A teary-eyed Sharon goes on to say, "I've always told him, 'I'll be your arms, I'll be your legs, I''ll be your everything for you, you just keep that diaphragm going,' so last week, Larry wrote on his computer, he said, 'you know I'd always tell you about changes. I can feel it in my diaphragm. That's the one I dreaded. That's the end game.' So with grace and dignity, we will move forward with hope, faith, but with the knowledge that he has lived and continues to live a gracious, wonderful and happy life."

Twelve patients will be involved in this next phase of the study and Dr. Appel is hopeful that his team will find the key to prolonging lives through this next study.

For information about the study, visit the following websites:

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