Nonprofit clinic first in DFW to specialize in care for patients with rare neuromuscular disorders

As a neuromuscular specialist, Castro was used to seeing children who needed multidisciplinary care, which she was not able to help provide in her previous role. Patients with degenerative disorders such as Duchenne and Becker muscular dystrophy often face significant barriers, and Castro knew they needed a clinic where they could receive quality comprehensive care, no matter their financial situation or what language they spoke.

Thanks to a $900,000 grant from global nonprofit CureDuchenne, Castro’s dream is becoming a reality. The first CureDuchenne clinic celebrated its opening at the Neurology & Neuromuscular Care Center at 2817 S. Mayhill Road, Suite 115, on Friday morning. The nonprofit clinic will be the first in Texas to provide care for neuromuscular patients regardless of insurance coverage or legal status. Unlike the limited care Castro was able to provide her previous patients, the clinic has a full medical team — including specialists in cardiology, pulmonology nutrition and physical therapy — aimed at addressing the complex needs of both children and adults with the rare disorder.

Duchenne muscular dystrophy is a progressive, fatal muscle-wasting disease usually diagnosed before age 5 and affecting 15,000 in the U.S. Patients require lifelong care, and inadequate insurance coverage can prevent many patients from accessing treatment. Texas has the highest percentage of uninsured residents in the country, with Dallas being the second least-insured metro in the nation.

Because of a lack of providers who specialize in treating the disease, Duchenne patients and their families are often forced to travel hundreds or even thousands of miles to access care.

It’s something CureDuchenne CEO and founder Debra Miller is all too familiar with. Miller’s now 26-year-old son has Duchenne; his diagnosis led to the founding of the organization, which is aimed at funding research initiatives and family support, in 2003.

“Even if it wasn’t that Dr. Castro is going to be seeing the underprivileged, the Spanish-speaking, the uninsured — even just English-speaking people that have good insurance, they’re still traveling across the country, in many cases, to get good care,” Miller said. “There are close to 1,000 Duchenne families in Texas, and it’s not just the Dallas area that’s going to benefit but Houston and Austin and all over the state. This is the first time that they’re going to have a dedicated clinic that they can go to — regardless of language, regardless of income, regardless of insurance — and get good care.”

Miller met Castro when the doctor spoke at CureDuchenne’s national family conference, Futures, in Orlando last year.

“Everything she was talking about with her vision was exactly what we would have done if we had the resources to open a clinic, so it was just kind of a marriage made in heaven,” Miller said.

The $900,000 grant from the organization will fund patient care at the clinic for the first three years. Castro envisions ongoing research and clinical trials as being a critical part of the practice going forward, giving patients access to advanced treatment protocols.

Castro said she has already gotten calls from other physicians who have a similar dream of one day opening a clinic where they can focus on patient-centered care rather than quotas.

“I think many doctors love what they do with a lot of passion, but the system is eating them — it takes your soul away,” Castro said. “There are a lot of physicians leaving the industry because of that, but there are many who want to continue seeing patients, just on different terms. I think this will hopefully be a model for others.”

For Miller, the clinic is a symbol of how far CureDuchenne has come and the differences initiatives like this can make in the lives of families like hers.

“I would not have been able to imagine 20 years ago that we would be doing this,” Miller said. “We just wanted to find a cure for our son and for all the other boys that we fell in love with that we met and their families. So for me to be able to partner with somebody like Diana is a dream for me also.”