IN JULY 2005, Jordan Ennis and his family’s lives changed with an unexpected diagnosis. His father, Steve Ennis, whom everyone knew for his fortitude and encouraging words, had been struggling with a series of troubling symptoms. But when doctors finally gave him the devastating diagnosis of ALS, they were left to face the harsh reality of a disease that, at the time, had little awareness or hope.
“He started showing signs earlier that year — his speech was slurred, and his legs didn’t work like they used to. He would trip, fall, and his ankles would just give out,” Jordan recalled.
“They finally diagnosed him with ALS at the Mayo Clinic in Rochester, Minnesota. We had no idea what it was. But after doing some research, we found out that the average lifespan for those with ALS is three to five years and that it was 100% fatal with no known cure.”
Jordan had just married a year earlier and was thriving in the family business. Life was good, and the future was bright. But this news turned everything upside down, leaving them devastated.
ALS, which affects the nerve cells in the brain and spinal cord, progressively robs people of their ability to move, speak, and eventually breathe. At the time of his father’s diagnosis, there was little public awareness about the disease and even fewer support systems for families facing it. But Jordan’s father was determined that his battle wouldn’t go unnoticed.
“He said, ‘I want to fight this,’” Jordan shared.
This inspired his daughter, Holly Ennis Proctor, to take action. While accompanying her father to the Emory MDA/ALS clinic, Holly found herself looking for ways to make a difference.
“I met someone in the clinic where my dad was seeing Dr. Glass,” Holly recalled. “I was talking with the staff about finding anything I could do to help with ALS or the clinic, and a fewdays later, an MDA member reached out about fundraising. And then the Night of Hope Gala was created.”
In 2006, the family held the first annual Muscular Dystrophy Association Night of Hope Gala. They wanted to raise both awareness and funds to support the research and ensure that people living with ALS knew they weren’t alone.
The Night of Hope Gala is an annual tradition that continues to honor his father’s memory and raise millions for ALS research. Held at the Intercontinental Buckhead in Atlanta, this event draws over 500 guests for an evening of celebration, auctions, inspiring speeches, and, most importantly — hope.
Every year, Jordan and his family present the Steve Ennis Hope Award to an individual who has dedicated themselves to raising awareness of ALS and money to support its research. The gala has raised over $12 million in its 18-year history. But Jordan believes the funds raised are just a by-product of communities banding together and supporting others.
The impact of ALS started to make waves in communities across the country, particularly when the Ice Bucket Challenge went viral in 2014. In three short months, it raised over $230 million for ALS research, shining a spotlight on the disease that had long been overlooked.
For Jordan, the connection to ALS became even more personal when he met former Alabama fullback and NFL player Kevin Turner and former Alabama tailback and NFL player Kerry Goode — two men whose lives were forever changed by ALS and whose friendship heavily influenced Jordan’s ALS advocacy.
Turner and Jordan first met in 2011 through a mutual acquaintance, and the two hit it off immediately. They both spent their time raising awareness and funds for ALS, and over the next few years, they attended several fundraisers together, becoming close friends. Turner, who was diagnosed with ALS in 2010, was already an outspoken advocate for the disease, having dedicated himself to helping others facing similar struggles.
“It was that meeting that really, looking back, is what inspired me to help people navigate this journey,” Jordan explained.
Goode, on the other hand, became part of Jordan’s circle after publicly announcing his own ALS diagnosis in August 2015. Goode, a former all-star at Alabama and player and strength and conditioning coach in the NFL for about 10 years, was a powerhouse who was well-known for his athleticism. But one day, he noticed something wasn’t right. Goode explained in a news release that he couldn’t even pick up a box that wasn’t heavy, and that made him realize something was wrong. Six months later, he was diagnosed with ALS.
When Jordan learned of Goode’s diagnosis, he knew he had to reach out.
“I called him to discuss the ALS journey and, most importantly, to let him know that he was not alone in this fight. I invited him and his wife, Tanja, to attend our Night of Hope event that year which was in a couple of months as our guests and sit at our table. And they haven’t missed one since. He is another truly inspirational person.”
While ALS remains a tough challenge with no clear cure in sight, Jordan has seen firsthand the difference that ongoing support, research, and awareness can make.
“One thing we are working hard to do is make the disease more livable and easier for people that are paralyzed in their own body to communicate with their eyes.”
In addition to working with the Night of Hope Gala, he’s also a sought-after speaker who shares his story and encourages others to remain hopeful during life’s tragedies. Between speaking at corporate events, helping others organize ALS fundraisers, or supporting other causes, Jordan’s heart for giving back is undeniable. He’s an advocate for ALS and for anyone experiencing adversity.
“Always, always look at the positives that can come out of any situation,” Jordan said.
“It may be tough to find sometimes, and it may take quite a while but work hard to try and find it because it can make a profound difference in your life and the lives of others around you.
When Jordan reflects on his father’s life and example, it’s evident that the lesson his father instilled in him — never give up, always stay positive — is a way of life. Through the Night of Hope Gala and his numerous other efforts, Jordan is living out those lessons every single day. GN
