Suzanne Higgins Published

Inspiring West Virginians to break ground on second, specialized clinic for rare genetic disorders

The Clinic for Special Children in Lancaster County, PA, a world-renowned treatment and research center for rare genetic disorders, will break ground on a second rural clinic in central Pennsylvania Saturday, Oct. 24 – part of the ongoing work of Dr. Holmes and Caroline Morton, West Virginia natives and subjects of WVPB’s series Inspiring West Virginians.

The Central Pennsylvania Clinic in Belleville, PA will serve as a medical home for hundreds of children and adults. As in the Lancaster clinic, here doctors and scientists will diagnose and treat rare genetic disorders found in Old Order Amish and Mennonite communities.

These diseases require significant attention and life-long care.

Dr. Holmes Morton, M.D., a native of Fayetteville, WV, along with his wife Caroline of Beckley, WV, have developed newborn screening programs adopted by Pennsylvania and several other states. Their Clinic is equipped to conduct sophisticated genetic testing rapidly and inexpensively for the communities they serve.

When he was named a McArthur Fellow a few years ago, Morton decided he would use a portion of the award to help people in other Amish and Mennonite communities establish medical centers modeled on the clinical practice of the Clinic for Special Children.

To date, these include facilities in Ohio, Indiana, and Wisconsin and follow a community-supported, non-profit financial model. Morton says this has enabled the CSC to make local pediatric care for children with genetic disease more accessible for self-pay families.

The ground-breaking for Morton’s second clinic comes after about 5 years of work with the community and within the community; Morton has been seeing patients in a small, leased Belleville office since 2012.

In 2014, Morton and the Central Pennsylvania Clinic (while housed in this small space) were named by Agios Pharmaceuticals and Boston Children’s Hospital one of three Co-Primary Investigators in a Natural History Study of a severe disorder of the red blood cell, known as Pyruvate Kinase Deficiency. The Clinic has enrolled 53 of 150 participants in this world-wide study. Medicine trials of a medication developed to cure PKD will start late this fall.

Donations for the second clinic, a 10,000 sq. ft. timber-frame building,  have come from all over – the first from Steelers’ owner Art Rooney, Jr. The Children’s Hospital of Pittsburgh also matched $400,000 raised by the Belleville community. 

Saturday’s event in Belleville starts at 10am. It’s a fundraiser and open to the public.