HHS Adds Duchenne MD to Screening Panel for Newborns
The U.S. Department of Health & Human Services (HHS) has added Duchenne muscular dystrophy and metachromatic leukodystrophy to the Recommended Uniform Screening Panel (RUSP) for newborns.
“Early detection of both conditions allows children to receive FDA [Food & Drug Administration]-approved therapies at the most effective time, helping to slow disease progression and preserve their quality of life,” HHS said in a Dec. 16 announcement.
HHS Secretary Robert F. Kennedy Jr. said, “Early screening gives every child a fair chance at timely, effective care, and it delivers families the answers and treatment options they deserve — right when they need them most.”
Duchenne muscular dystrophy typically presents in boys in early childhood, starting with proximal muscles and extending later to distal limb muscles. In addition to impacting mobility, Duchenne MD impacts the heart as well as muscles used in breathing.
Metachromatic leukodystrophy — a genetic disorder in which fatty substances build up in cells, particularly in the brain and spinal cord, and damages myelin, according to Mayo Clinic — was also added to the RUSP. Other conditions on the RUSP include sickle cell disease, cystic fibrosis, spinal muscular atrophy, and infantile Krabbe disease.
United Spinal Adds Chapter in Hawaii
United Spinal Association has said aloha to its newest chapter, now supporting wheelchair riders on the island of Oahu.
The new chapter, the first in Hawaii, was founded by Leigha Stafford, PT, DPT, assistant professor at Hawai’i Pacific University in Honolulu.
“Leigha Stafford has developed a deep understanding of the unique challenges the state presents for wheelchair users while working the past decade as a physical therapist in Oahu at Hawaii’s only rehab hospital,” United Spinal said in a Dec. 10 announcement. “She has seen how the rugged terrain impacts accessibility and infrastructure and how the state’s island composition can impede efforts to build community.”
Stafford, the announcement added, was inspired by the “continuum of care” demonstrated by Craig Hospital in Englewood, Colo. ““The biggest takeaway I got from Craig is their approach to the continuum of care,” Stafford said in the announcement. “They go from the hospital all the way to community.”
She created a website and an Instagram page to help connect wheelchair riders living in the state, with a long-term goal of expanding beyond Oahu to other islands. The program includes adaptive surfing, snorkeling, scuba diving, climbing and biking, year round.
