TAMPA, Fla. (WFLA) – While there’s no cure for amyotrophic lateral sclerosis, or ALS, there is an experimental medication that might slow the progression of the deadly disease. The FDA is reviewing the drug Wednesday.
The research for the drug was supported in part by donations from the Ice Bucket Challenge, which took off in 2014 and raised $200 million worldwide.
There is no cure for ALS, also known as Lou Gehrig’s disease. This awful disease robs people out of life. News Channel 8’s Brittany Muller knows first-hand as her grandmother was robbed of her life at the age of 61, when Brittany was five years old.
For those like Troy Fields, this drug could be a game-changer. He is a voice, an advocate and it’s his personal responsibility.
“That’s where the ALS Association Florida Chapter came in,” he said. “I’ve been very fortunate even though my body is weakening, and I can’t move my arms or my legs, I could still find ways through them to stay engaged and active and keep my mind occupied.”
Fields was 52 when he noticed twitching and hand dexterity. While doctors ruled out other diseases, it took eleven months for an ALS diagnosis, which is sadly not unusual.
“We change our behavior, we change our attitude, we change our outlook, and we adapt to new environment.”
After leaving a job he loved so much, Troy at 58 years old is dependent on the support of his wife, four kids and three grandkids and finds independence on raising awareness, funds and recruiting advocates to ‘Defeat ALS.’
“Just in the past 30 years, there have only been two FDA-approved treatments for ALS and when I say treatments these are not cures these are things that buy you two or three months,” said Fields.
On Wednesday, the FDA is voting on an experimental drug for patients that could slow down the disease.
Earlier this week, FDA scientists released a review of the drug, saying the company’s data on the medication “may not be sufficiently persuasive” to recommend approval.
“Another six months can mean the difference from attending your daughter’s wedding or your child’s college graduation or the birth of our grandchild,” Fields said.
When you’re fighting for your life six months is a game-changer.
“I was one of eight people who talked with the FDA last year as part of the push with the ALS association to try to get AMX 0035, which is the drug that is being re-considered by the FDA,” he said.
Fields hopes our community can become aware, become engaged, volunteer, donate and advocate. There are two ALS walks scheduled in April.
- Sarasota Walk to Defeat ALS on April 2 at Payne Park.
- Greater Tampa Bay Walk to Defeat ALS on April 30 at Whiskey Joe’s (7720 W Courtney Campbell Causeway, Tampa, FL 33607).
You can join Troy’s T-Rexes team here if you would like to walk with him and his family at the Tampa ALS Walk.
The ALS Association Florida Chapter is also hosting its first annual Ice Bucket Bash on Oct.1. It’ll be an interactive event as the CEO and local celebrities get splashed at the end of the night for a twist on the Ice Bucket Challenge.