A Pioneering Approach to Healing: Health and Wellness
Mar 12, 2020 06:51PM
● By Emma Eldridge
Internationally recognized as an innovative medical and scientific organization, the Clinic for Special Children is on the cutting edge of genomic and translational medicine.
By Jennifer Pencek
Leon and Linda Hoover know firsthand the impact the Strasburg-based Clinic for Special Children has on families.
The couple’s son, Raylon, was born in 2003 with a disease that left him with no immune system. After an eventual genetic-related disease diagnosis through the Lancaster County clinic, staff connected the couple with the Children’s Hospital of Philadelphia (CHOP). Despite a bone marrow treatment, Raylon passed away.
When another son Logan was born in 2007, doctors immediately tested for the same disease. Like his older sister Esther Mae, Logan was healthy. Daughter Kendra, born in 2011, also was proactively tested and diagnosed within a few days. Esther Mae was a perfect bone marrow match and Kendra received a transplant at 17 days old at CHOP. When the first transplant didn’t take, Kendra received a successful second transplant at six months old and is now thriving.
The fundraising effort
The Hoovers knew they wanted to support the clinic that has been so helpful to their family. In 2012, the Clinic for Special Children Benefit Auction began in Union County, thanks to the leadership of people like the Hoovers.
This year, the Union County Benefit Auction takes place Saturday, June 6, 7 a.m. to 4 p.m., at the Buffalo Produce Auction in Mifflinburg. An ancillary fundraising event, a flower auction and rib dinner, will be held June 5 from 5 to 8 p.m. at the same location. One of the hallmarks of the auction is the eclectic mix of goods up for bid, including furniture, quilts, toys, sporting goods and specialty items.
“It’s more than just an auction,” said Leon Hoover, who serves as auction chair. “It’s really more of a community effort. It’s so important to have the auctions or else the clinic couldn’t do the great work they are doing.”
The underlying mission
Created 30 years ago, the Clinic for Special Children, a non-profit organization, serves predominantly Amish and Mennonite children and adults with genetic, metabolic and complex medical disorders. The clinic sees patients in a post- and beam-style timber-framed building “raised” largely by volunteers from the Plain communities outside of Strasburg. The clinic provides comprehensive medical, laboratory, and consultative services, and disseminates information. Approximately 1,100 active patients, from 17 countries and 42 states, with more than 300 unique disorders, are seen annually.
According to its website, the clinic is envisioned as a medical home for patients, meaning they can see physicians knowledgeable about their disorder when they are sick and when they are well. To enhance the medical home concept, the clinic has forged collaborative relationships with individual physicians and healthcare organizations to provide affordable specialty care on site, making the services more accessible to patients.
The clinic staff, including Harvard-trained medical director Kevin A. Strauss, MD, collaborate with other researchers and scientists frequently to advance scholarly research on causes and treatments of rare genetic diseases. In 30 years, clinic staff have published over 110 peer-reviewed articles.
The work goes on
Annual benefit auctions—like the one held in Union County—are important fundraisers, generating more than $1 million for clinic expenses in 2019, Hoover said.
Along with the Union County auction, other Pennsylvania auctions benefiting the clinic are held in Lancaster, Shippensburg, and Roaring Spring, along with auctions in Shiloh, Ohio, and Memphis, Missouri.
Learn more about the history of Clinic for Special Children at SusquehannaLife.com/WebExtras.