Rationale
Prevalence of Rare Genetic Disease
Northeast Ohio’s Amish community descends from a small group of immigrants who fled religious persecution in Europe. Over generations, some inherited conditions have become more common in their community while others have become less common. These genetic diseases are European in origin, occurring in families all over the world. However, many are not well-studied and need better therapy options.
Burden of Cost
The Amish community traditionally and largely does not participate in health insurance programs. As a result, the cost burden of their health care is a big factor in their treatment decisions, directly affecting accessibility and perceived relevance of typical treatment options.
Difficulty in Accessing Care
Gaps of information and understanding often create difficulties for families of children with special needs or development delay. When healthcare providers do not recognize a child’s condition, the child may receive many diagnostic tests. The burden of cost can quickly become unbearable.
Population-Specific Physicians
New Leaf’ Center’s primary care physicians and staff provide local medical care on a daily basis to children with inherited conditions that are common within the community. Our medical team is acquainted with the genetic conditions and culture of the community and is able to provide knowledgeable, relevant care. Families can establish a trusting relationship with the medical team who will both explain the options for treatment and guide the parents in making informed decisions.
Cost Savings
By providing for the cost of a physician and a clinic up front, the community not only receives quality, accessible health care, but also is able to greatly reduce the overall burden of cost, both for the families of affected children and the supporting community. Familiarity with the genetic conditions of the community leads to cost-effective testing and diagnosis. Early detection and intervention lead to reduced hospital visits. Collaborative relationships and diligent networking lead to reduction of costs for some medications and treatments.
History
New Leaf Center started from the dreams of a young doctor, and has become a highly used and respected clinic. For a more in-depth look at how NLC got its start, see the article New Leaf Clinic: Unrelenting Love to Children with Special Needs that was published in the June 2014 edition of Just Plain Values magazine.
Funding & Donations
New Leaf Center is currently funded in three primary ways.
Donations
The clinic relies heavily on the generous donations from the community to sustain its work. Currently 66% of the operation costs are provided by families, churches, and businesses.
Fees
It is New Leaf Center’s goal to receive approximately 15 percent of its operating budget from fees for services. In the beginning costs for services were carefully selected to maintain a reasonable responsibility on the part of self-pay families without creating a financial barrier. It is still something we strive for.
Collaboration
Akron Children’s Hospital was instrumental in the clinic’s formative process by providing time for Dr. Wenger to begin work on the clinic’s foundational network. They continue to provide financial support for our physician positions.
Grants awarded to New Leaf Center to date:
- AAP CATCH Grant
- Austin Bailey Foundation
- Wayne County Community Foundation
- Laura B. Frick Charitable Trust
- Akron Children’s Hospital Research Fund
Statistics
Patient Base
New Leaf Center opened in January 2013 with 30 active patients. By June 2016 the patient base had grown to over 350. In 2019 we have 450 active patients.
Diagnosis Rates
In our first two years of service, 61 patients were of “unknown diagnosis” at their first NLC visit. Seventeen (17) of those were able to receive a molecular diagnosis, a diagnostic rate of 28%.
Geographical Area
Most of New Leaf Center patients live in 12 counties in Ohio. The majority of those are from Wayne, Holmes, and Tuscarawas counties. A few have visited us from other states.
Common Conditions Seen
- Aicardi-Goutieres Syndrome (SAMS association)
- Amish Brittle Hair Syndrome
- Blue Eye Delay Syndrome (HERC-2)
- Cartilage Hair Hypoplasia (Dwarfism)
- Chromosomal Deletions/Duplications
- Cobalamin-C Deficiency
- Cockayne Syndrome
- Cornelia DeLange Syndrome
- Cystic Fibrosis
- Down Syndrome (Trisomy 21)
- Galloway-Mowat Syndrome (Nephrocerebellar Syndrome/Yoder Dystonia/Hershberger Syndrome)
- Glycogen Storage Disease Type 1a
- GM3 Synthase Deficiency
- M.A.S.D. (Macrocephaly, Anxiety, Seizure, Developmental Delay)
- Mennonite Microcephaly
- M.O.P.D. (Microcephalic Osteodysplastic Primordial Dwarfism)
- Osteopetrosis
- Propionic Acidemia
- SNIP-1/PMRED (Symptomatic Epilepsy and Skyll Dysplasia)
- Unknown causes of developmental delay/cerebral palsy/epilepsy
Many of our patients with neurodevelopmental disease (cerebral palsy, epilepsy, delay) do not have an overarching diagnosis. However, the list of known causes of neurodevelopmental disease grows with collaboration and effective use of diagnostic resources.
Our Staff
Olivia Wenger, MD
Pediatrician, Medical Director
Olivia Wenger is a board certified pediatric physician. She grew up in Lewisburg, PA and received a bachelor science degree at Elizabethtown College. Her medical doctorate is from Albert Einstein College of Medicine. She completed a Pediatric Residency/Chief Year at Akron Children’s Hospital in 2008. She worked with Drs. Holmes Morton and Kevin Strauss at the Clinic for Special Children (Strasburg, PA) from 2009-2010. She has been a member of the medical staff at Akron Children’s Hospital since 2010.
Dr. Ethan Scott
Pediatrician
Dr. Ethan Scott joined New Leaf Center in July of 2019. Ethan grew up in Akron and attended Northeast Ohio Medical University, completing his pediatric residency at Akron Children’s Hospital. In his free time he enjoys taking drives, exploring new areas with his wife, spending time with family, going to church, working out and reading about medical history.
Barbara A. Reinford
Executive Director
Barbara A. Reinford grew up in the Kidron, OH area. She received a bachelor degree in nursing from Eastern Mennonite University. Prior to joining the New Leaf team, she worked the past 14 years as Market Operations Manager at Everence. Before that she worked in community health in North Carolina and Alabama.
Arie Troyer, LPN
Office Manager
Arie Troyer worked at Milltown Family Practice for 16 years. Previously, she worked at The Mennonite Home in Pennsylvania, Rosedale Bible Institute and served with Mercy Ships in western Africa.
Angela Zeurcher, RN, BSN
Nurse
Angela Zuercher received a bachelor degree in nursing from Eastern Mennonite University. She worked at Aultman Hosptial for 13 years on the obstretics unit, giving post partum and newborn nursery care prior to coming to New Leaf.
Janice Rufener, RN
Nurse
Janice Rufener has worked in various positions as a nurse and raised a family of seven children. She had a special needs grandchild whom she loved dearly and helped to care for.
Carol Fry, RN
Nurse Manager
Carol Fry earned her RN degree from Cuyahoga Community College. Her most recent nursing position was with LifeCare Hospice. She joined New Leaf Center as Nurse Manager in the fall of 2018.
Jennifer Hershberger
Services Coordinator
Jennifer joined NLC in late 2019. She provides support to clinic administrative staff with various duties, and assists with family communication regarding research projects and obtaining consents. Jennifer holds a bachelor’s degree in Public Health from Kent State University, and has previous experience as an Outreach and Family Services Coordinator at Wayne Metropolitan Housing Authority.
Board of Directors
Stephen Steiner, (Dalton, OH)
Brian Kempf, (Dalton, OH)
Jason Miller, (Millersburg, OH)
Atlee Raber, (Berlin, OH)
Dannie Troyer, (Fredericksburg, OH)
James Troyer, (Baltic, OH)
Myron Troyer, (Sugarcreek, OH)
Shannon Stutzman, (Dundee, OH)
R. Daryl Steiner, DO (Dalton, OH)
New Leaf Center is also under the direction of a Bishop Advisory Committee and a Medical Advisory Committee.
FAQ
Who are “special children”?
The plain people (Amish and Mennonites) call children with special medical or learning needs “special children.” Special children are seen as gifts from God by their communities.
What is a medical home?
The word “medical home” represents the ideal for how medical care should be provided to all children. A “medical home” is not an orphanage or residence. It is a place close to home where a child with special medical needs can find people who treat them well.
Does New Leaf Center accept medical insurance?
If a child can benefit from the services of New Leaf, we want to see them! We will not deny a child an appointment or regular care because of the inability to self-pay for services or whether they are insured. New Leaf was designed to meet the medical needs of self-pay families. Therefore, the only payment plan/insurance we currently bill is the Ohio Crippled Children’s Fund (OCCF). Families who have medical insurance are encouraged to schedule with us and explore the options available for their children.
Does New Leaf Center use natural medicine?
We understand that many of our parents prefer to use natural medicine before traditional. However, we do not dispense or prescribe natural medicines at New Leaf.
Does the staff speak Dutch?
Some of our staff speak Dutch. Some wish they could.
What does it cost to come to New Leaf Clinic?
A typical first time visit costs $100 and is often more than 2 hours long. Follow up visits are $65. Additional labs and medications are extra.
Is it possible to know the risk of having children with inherited disorders?
Yes. With many inherited conditions, it is possible to know the risk of recurrence.