Energetic, compassionate, determined, kind. And passionately committed to the fight against ALS. These are all ways to describe Denise Kirkland, the new Board Chair of The ALS Association North Carolina Chapter.
Denise got involved with the fight against ALS when her good friend Rex Williams was diagnosed with the disease in 2009. Rex and his wife, Bonnie, were like family to Denise and her husband, Jim. They spent weekends together. Their kids went to school together. And when Rex was afflicted with ALS, they fought that together, too.
An avid volunteer and the 2010 Wake County School Systems Volunteer of the Year, Denise jumped in the best way she knew how. In addition to helping the family with anything she could from going grocery shopping to walking the dog she decided to channel her abundant energy and enthusiasm into making a difference for people living with ALS.
“I’d always been really active in the public schools when my kids were in school raising money and awareness so I thought, let me just channel that energy into ALS,” Denise said. “So I started doing fundraisers and bringing awareness to our friends. I just really found this drive in me that just wouldn’t stop.”
As Denise saw Rex’s daily progression and started meeting more people who were living with ALS, her passion continued to grow. She walked with Sexy Rexy’s Racers in the Triangle Walk to Defeat ALSŪ, and in 2013 she joined the board of The ALS Association North Carolina Chapter.
She is encouraged by the advances in research pointing out that the 2014 ALS Ice Bucket Challenge “brought research to the forefront.” She talked about the medications in Phase 3 trials, the genes that have been discovered and isolated, and the antisense therapies that are being developed to treat familial ALS. “I think that’s really hopeful and will open up doors to (treat) more of the sporadic ALS,” she said.
Denise also is thankful for the improvements in quality of life for people with ALS, highlighting the impact of speech generating devices. “That’s a huge role when you’re losing your abilities to be able to communicate,” she said. “That’s what makes us people that we can talk to our loved ones, our family, or share with the physicians what’s going on. That is huge to be able to still communicate. Even with the wheelchairs, all that they’re able to do the terrain they’re able to go across… ALS patients can go on to the beach, they can go on to the mountains and really enjoy life as best that they can. There are a lot of things that we can do besides just medically, but quality-wise, to make life better for people with ALS.”
As Chair of the Board for the North Carolina Chapter, Denise is excited to continue leading the way toward a world without ALS. “To share what The ALS Association is doing on all the fronts with advocacy, research and care services the clinics that we offer it’s just amazing,” she said. “To share that with people who have ALS, to say if you have this disease, you can’t be in a better place. And also to share with people who don’t know much about the disease this is what we’re doing and let me tell you about this disease and how it’s affecting so many people. They might not have a connection, but oftentimes they become supportive of it.”
Denise is determined to make a difference in the fight against ALS, and to not stop until there are effective treatments and a cure. “We have lost our friend, but I continue to fight for treatments, to help with anything I can do to give them better quality of life,” she said. “I know there is a bright future for people in the ALS community. We just have to continue supporting them.”