The CureDuchenne Clinic is located at the Neurology & Neuromuscular Center (NNCC) based in Denton, Texas and aims to remove significant barriers of access for patients who need highly specialized care.
The clinic, led by Dr Diana Castro, will provide neurology, cardiology, pulmonology, nutrition, physical therapy, durable medical equipment, diagnostics, and chest radiography for both pediatric and adult Duchenne and Becker muscular dystrophy patients.
She said that care at this clinic will never be denied due to lack of insurance for patients living with Duchenne or Becker muscular dystrophy from childhood to adulthood. Duchenne muscular dystrophy is a progressive, muscle-wasting disease in children, affecting 15,000 individuals in the U.S. Children are usually diagnosed before the age of five and require lifelong care.
She explained how this is a complex disease without a cure and said that multidisciplinary healthcare teams are essential to managing individual needs. Because of the complexity of the disease, caregivers and patients traditionally must navigate significant hurdles to get quality of care.
Insurance hurdles
This, she adds, is one of the most challenging hurdles is insurance cover so patients can access to care. Texas has the highest percentage of uninsured residents in the nation and Dallas is the second least-insured large city. Large racial disparities also exist in insurance rates with Hispanic individuals being uninsured at a rate of nearly 38 percent – nearly double the state average.
Care and resources in both Spanish and English, will be provided for insured and uninsured patients. Castro sees great need for such services in the Dallas area, estimating that 30 percent of the families she sees are uninsured and 45 percent are on Medicaid, which is not accepted at all care centers. It will be accepted at the CureDuchenne Clinic. CureDuchenne has granted $900k (£746k) over three years to support the clinic’s Duchenne and Becker operations.
Castro, a board-certified neurologist, and neuromuscular physician is a pioneer in research and management of patients with spinal muscular atrophy (SMA), Duchenne muscular dystrophy (DMD), myasthenia gravis, and acquired neuropathies.
Since completing training in pediatric neuromuscular medicine, she has conducted multiple clinical research trials in SMA, DMD, and Charcot-Marie-Tooth (CMT) disease, among other conditions. After more than ten years, Castro left academia with the objective of creating a non-profit private practice and research institute for neuromuscular conditions.
Venture philanthropy with CureDuchenne
She said: “Our ultimate goal is to help patients to the best of our ability, and we do that by offering specialized and inclusive care for all patients, especially the most vulnerable and underserved populations.
“The CureDuchenne Clinic will bring compassionate care to everyone with Duchenne and Becker and would not be possible without CureDuchenne, who is not only focused on accelerating a cure, but also improving the health and wellbeing of patients living with Duchenne.”
CureDuchenne was founded by Debra and Paul Miller in 2003 after their son was diagnosed with Duchenne muscular dystrophy. The organization combines fundraising and venture philanthropy, leveraging donor dollars to maximize support for promising research into transformative treatments for those living with Duchenne.
Debra, who is CEO, said: “Imagine getting a devastating diagnosis like Duchenne muscular dystrophy, and then wondering how you will access the highly specialized, and often very costly, care that is required for your child.
“We must eliminate these barriers to care and improve the lives of everyone affected by Duchenne, while also offering hope for families as we strive for a cure. We’re honored to partner with Castro and the team at the Neurology & Neuromuscular Care Center to ensure that high quality care is available to those who need it most.”
