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.
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.
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.
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. For more information on the merger of New Leaf Center and Windows of Hope, see the NLC Newsletter Fall 2017.
Funding & Donations
New Leaf Center is currently funded in three primary ways.
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.
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.
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
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.
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%.
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)
- 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.
Barbara (Barb) Reinford grew up in the Kidron, OH area. She received a bachelor’s degree in nursing from Eastern Mennonite University. Prior to joining the New Leaf team, Barb worked as Market Operations Manager at Everence. She has also worked in community health in North Carolina and Alabama. Barb said, “I feel privileged and blessed to work at an organization that has such wonderful community support and dedicated employees.” She and her husband have two grown children and two grandchildren. Perennial gardening and reading are favorite past times.
Olivia Wenger, MD
Medical Director, Pediatrician
Dr. 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. Upon completion of a Pediatric Residency at Akron Children’s Hospital in 2008, she worked with Drs. Holmes Morton and Kevin Strauss at the Clinic for Special Children (Strasburg, PA). She has been a member of the medical staff at Akron Children’s Hospital since 2010. Dr. Wenger worked tirelessly to start New Leaf Center and became the full-time physician when it opened in 2013. She is married and has four children.
Dr. Ethan Scott
Dr. Ethan Scott is a Board Certified pediatric physician. He began employment at New Leaf Center in July 2019. He grew up in Akron, the oldest of three children, and graduated from Kent State University. Dr. Scott received his medical doctorate from Northeast Ohio Medical University (NEOMED) and completed his pediatric residency at Akron Children’s Hospital. Ethan is married and he and his wife have one child. In his free time, he enjoys taking drives and exploring new areas with his wife, spending time with family, going to church, working out, and reading about medical history.
Carole Fry, RN
Carole earned her RN degree from Cuyahoga Community College. Before joining New Leaf in 2018, she worked at LifeCare Hospice as a nurse manager. Carole said, “I love working at New Leaf Center because I feel like I am really making a difference in the lives of the children we see. I love the relationships that are made with the children and their families, and I am humbled to share in their care.” She is married and has two children and two grandchildren. Her hobbies include playing music and gardening.
Angela Zeurcher, BSN
Angela received a bachelor’s degree in nursing from Eastern Mennonite University. Prior to coming to New Leaf in 2014, she worked at Aultman Hospital in the obstetrics unit, giving postpartum and newborn nursery care. She said, “I love meeting new families at the clinic and having the opportunity to share in their stories. It’s a joy to watch the children grow and change as they come back for follow up visits and to do what I can to help meet their needs.” Angela has four boys who keep her and her husband busy with various activities.
Patient Services Coordinator
Jennifer joined NLC in late 2019. She provides support to clinic administrative staff – assisting with patient education and family communication regarding research projects. 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. Jennifer said, “I enjoy working with the wonderful staff and although I do not provide direct care to the children, I am truly grateful to be a part of the clinic’s staff working behind the scenes to care for and serve our families.” She is married and has one daughter. In her off time, she enjoys running, hiking with her family, and photography.
Valerie joined New Leaf Center in early 2020. She holds an associate degree in Business Management Technology and brings many years of experience in bookkeeping and banking. She most recently worked at Everence as a member service representative. She is married and has two adult children. When not working, Valerie loves spending time with her family. She also enjoys reading, being outdoors taking walks, running, bicycling, and playing with her dogs. She said this about working at New Leaf, “I feel I am contributing something important working for a non-profit.”
Janice Rufener, RN
Office Assistant and Nurse
Janice started as a volunteer at New Leaf Center after a special needs grandchild passed away. She was hired as an employee in 2015. She graduated from Akron City Hospital School of Nursing, and after holding several nursing positions, paused her career to raise seven children. Janice commented that she feels very privileged and blessed to be able to work with a compassionate staff and to serve those with special needs and their families. She has 16 grandchildren who she loves to spend time with.
Catherine was hired in July 2020 as part-time office assistant. She grew up near Mt. Eaton and has four siblings. She enjoys working with people and has experience as a family helper, selling wholesale and retail, and teaching school. Training her two horses occupies some of her time as well as participating in a drill team. Being with family and friends, volleyball, and visiting coffee shops are just a few things she also likes to do. She is ready for an adventure any chance she gets!
Board of Directors
Atlee Raber, (Berlin, OH)
Brian Kempf, (Dalton, OH)
Dannie Troyer, (Fredericksburg, OH)
Gary Yoder, (Dundee, OH)
James J. Miller, (Sugarcreek, OH)
Jason Miller, (Millersburg, OH)
Matt Troyer, (Berlin, OH)
Shannon Stutzman, (Dundee, OH)
New Leaf Center is also under the direction of a Bishop Advisory Committee and a Medical Advisory Committee.
Frequently Asked Questions
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 Center?
A typical first time visit costs $110 and is often more than 2 hours long. Follow up visits are $75. 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.