Kansas Nonprofit Gains New Partnership to Help Families Battling Rare Diseases

WICHITA, Kan. (KSNW) – While rare diseases are scarce, collectively they are more common than people realize.

“Rare diseases infect one in 10 people,” said Blake Benton. “That could be your neighbor, someone you go to church with, someone at the grocery store, that’s fighting something that may not be apparent on the outside, but at home, it can be making a major difference and a strain in their house.”

Blake Benton saw the challenges caregivers face firsthand.

“You can be completely lost, you know, when it’s your loved one. Most oftentimes, you’re not coming from a medical background and so you are just learning on the fly,” he said.

Blake’s older brother, Ryan Benton, had Duchenne muscular dystrophy.

“He never wanted the disease to define him,” he said.

Ryan was a musician and an advocate.

“So many times in this journey it feels like one step forward, two steps back,” said Ryan during an interview with KSN in February 2023.

Ryan and Blake started Coming Together for a Cure. The nonprofit aims to help advance stem cell therapy and be a go-to resource to help people fighting rare diseases.

“Families don’t realize that these things are out there so often,” Blake, co-founder and director of strategic initiatives for CTFAC, said.

In March, the nonprofit partnered with Cariloop to give families free access to its caregiver support platform.

“They get connected to an actual person that can immediately understand their direct needs,” Blake explained. “Then, they can guide them to the specific tools and resources that can help them through their daily life.”

The Cariloop coaches can help schedule appointments, manage documents, and offer emotional support.

“You can just focus on living your best life,” Blake said. “By having these caregiving solutions designed in a way that really fits your specific needs. It just makes life easier for everybody.”

It relieves stress that can build under the pressure of caregiving.

“There was a brief period where I didn’t feel like I was his brother first. I was his caregiver first,” Blake recalled.

Blake can attest that having help on the journey lets bonds stay tight.

“It was like we were brothers again. He was my best friend, and I didn’t have to deal with just being this person he had to rely on, but I could step in when I wanted to not because I had,” he said.

Even though he’s gone, Blake brings Ryan’s memory with him daily as CTFAC grows.

“I think Ryan would be very proud that his legacy has lived through,” he said.

The partnership with Cariloop is the first major collaboration to expand CTFAC’s Trusted Support Network.

CTFAC serves families in Kansas and all over the world. If you are interested in getting connected to resources or learning more about stem cell therapy, click here.