“One of the most valuable things about this clinic is we know families and patients over the long-term and we remember the unsolvable cases,” explained co-founder Holmes Morton, MD, to a visiting delegation of approximately 25 representatives from ˛ÝÝ®ÉçÇř and Heartland Clinic on Feb. 9.

The ł§łŮ°ů˛ą˛ő˛úłÜ°ů˛µĚýclinic largely serves the Amish and Old Order Mennonites who have rallied around the clinic and, in a way, accepted it into their fold. This population has a relatively small genetic pool, which makes it at high-risk for certain genetic disorders. The clinic makes a special effort to catch the children with genetic conditions early in their lives, offering comprehensive care that it tries to keep affordable.

The EMU/Heartland group came to the Strasburg clinic to explore whether the Old Order and Conservative Mennonite communities in the Shenandoah Valley might benefit from a similar research-based clinic in the vicinity of Harrisonburg.

In both Pennsylvania and Virginia, the rather insular, intentionally non-modernized Anabaptist-rooted communities have descended from small founder populations and gain few outside members, resulting in a limited genetic pool. As a result, these populations are at high-risk for certain inherited genetic disorders, such as Maple Syrup Urine Disease and Glutaric Acidemia (GA-1).

Since its founding in 1989, the Strasburg clinic has become a leader in the field of rare genetic disorders. People from all over the world come to the tiny, barnlike clinic in the middle of a cornfield to be treated.

To do this, Holmes Morton and co-founder Caroline Morton (his wife and board member) believed that they needed a space where clinical care would be supported by on-site laboratory services.

To install and run the expensive laboratory equipment, the Mortons were prepared to take out a second mortgage on their own home – a plan they got to shelve when a 1989 Wall Street Journal article thrust them in the public eye. The result was a flood of donations by readers, including a donation of equipment valued at $250,000 from Hewlett-Packard.

The clinic is a 501(c)3 nonprofit, with just over a third of the clinic’s operating budget coming from yearly auctions put on by the community. Another third comes from donations and the rest is from collaborations, an endowment and a small percentage from patient fees. The clinic’s operating budget is currently $2.6 million dollars a year.

In the Shenandoah Valley, the Heartland Clinic already serves Old Order and Conservative Mennonite populations in the Harrisonburg/Dayton area for services such as physical therapy, dental care, childbirth, and general medical checkups. Though Plain populations in Virginia are also likely suffering from inherited genetic disorders, Heartland doesn’t have the resources or facilities to do the kind of genetic testing and treatment the Clinic for Special Children is offering.

The visiting EMU/Heartland group learned of ways that the clinic is collaborating with undergraduates from nearby Franklin & Marshall College (F&M). As they study the genetic disorders presenting at the clinic, these students are getting opportunities to see how new proteins function – an opportunity that is not even available in many medical schools, said Robert Jinks, an F&M professor of biology.

With the completion of the renovations on the Suter Science Center, EMU will have the facilities to do genetic research, but it would need to add equipment costing as much as $100,000. However, the academic opportunities for students to study genetic diseases – some of which haven’t even been discovered yet – could be invaluable, said Roman Miller, director of the MA in biomedicine program at EMU.

“We do have a vested interest in this in this,” he said, in that this kind of research is “academic education being expressed in practical ways.” Miller added that the project fits EMU because it connects with the university’s mission to offer “ healing and hope in our diverse world.”

EMU, Heartland and the Clinic for Special Children are at the beginning of considering whether cooperating on this project would be desirable and possible. But as the group listened to presentations from Jinks about the current work at F&M, were given a tour of the building, and heard more about what kind of services the clinic offers, it became clear that the parties plan to continue having serious conversations.

As Morton observed, “Part of what I see in this collaboration is an opportunity for you to do for your community to do what we have done here.”

The group that explored the work of the Clinic for Special Children in Strasburg, Pennsylvania, on Feb. 9, included the following (all associated with EMU, except for the Heartland and Strasburg clinic staffers): back row, from left, philosophy/theology professor Christian Early, president Loren Swartzentruber; biology professor Jeffrey Copeland; second row, Heartland board member Jonathan Martin; MA in biomedicine consultant Joseph Longacher; nursing instructor Kate Clark; nursing professor Don Tyson; Strasburg administrator Adam Heaps; graduate dean Jim Smucker. Front row, Heartland board member Neil Beery; Heartland physician assistant Jonathan Shomo; biology professor Roman Miller; marketing director Andrea Wenger; advancement vice president Kirk Shisler. (Photo by Kara Lofton)

Each year at ˛ÝÝ®ÉçÇř, dozens of expert scientists visit campus to share their insights. Some focus on their cutting edge research and work in the field, and some share perspectives on social reform and sustainability in the context of science. See more at: http://www.emu.edu/science-seminars

Holmes Morton made his life’s work to study and treat genetic disorders primarily in Mennonite, Brethren and Amish communities. The physician and his wife Caroline founded the non-profit in Lancaster County, Pennsylvania, in 1991. Morton’s work is highly acclaimed; he was awarded the Albert Schweitzer Prize for Humanitarianism in 1993 and a MacArthur Foundation “genius grant” in 2006.

Morton spoke recently at a Suter Science Seminar titled “Genomic Medicine and Plain People.” He was joined by his older brother, Paul Morton, who is helping to start similar clinics in rural areas, as well as medical historian and family friend Terry Sharrer.

Sharrer, a former curator at the Smithsonian Institute, began by telling the story of Henrietta Lacks, a Boston woman who developed a severe form of cancer. Her doctors removed some cancer cells for analysis, but they found that the cells, unlike normal cells, could divide rapidly and continuously in a Petri dish.

Without Henrietta’s consent, these multiplied cells were distributed throughout the world to aid research of cancer and other diseases. These immortal “HeLa” cells have long since outlived Henrietta, who eventually died of the disease. Henrietta Lacks was buried in an unmarked grave in the family cemetery in Halifax County, Virginia –a story that was told in the 2010 bestseller .

This story points to a problem researchers must avoid when testing patients. Sometimes, patients “are seen as interesting subjects or paying customers, not sick people who need care,” said Sharrer.

Paul Morton then explained the logistics of running the clinic. The Clinic for Special Children has a symbiotic relationship with Lancaster County. It was built on donated Amish land and “raised” by Amish volunteers. A popular annual , with whoopee pies and doughnuts to feed hungry bidders, continues to raise funds to help the clinic serve local families as well as the children of 34 states and 17 countries.

Morton, who spoke for most of the lecture, described genetic disorders endemic to “plain folk,” with emphasis on glutaric acidosis and maple syrup urinary disease. In glutaric aciduria, children are at risk of a stroke that damages the basal ganglia, an important nerve structure. If these children live past the risk period without the stroke, they can live normal lives. If the stroke does occur – usually before 18 months of age – children suffer irreversible damage. The stroke can be prevented easily, but only if the doctors diagnose the disease.

Maple syrup urinary disease, so named for the sweet smell it confers to urine, is another impossible-to-cure but easy-to-treat disease. It can cause an intellectual disability, but damage can be prevented with a protein-free diet.

Diagnosis before the appearance of symptoms is the key to treat these disorders, said Morton. Many genetic disorders can be remediated by simple medical treatments or procedures. If the disorders remain unseen, however, the damages they cause are often irreversible. It helps to “understand the underlying genetic background of the community,” he said.

This lecture was cosponsored by the Suter Seminar series and the Shenandoah Anabaptist Science Society. The series consists of 17 expert presentations – averaging two per month – during the fall and spring semesters. Visit for information about future talks.