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DDC Clinic ~ Center for Special Needs Children

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Middlefield, OH
DDC Clinic ~ Center for Special Needs Children

A non-profit primary care physicians office serving patients with rare genetic disorders.

01/08/2026

At DDC Clinic, our mission is to improve the lives of individuals and families affected by rare genetic disorders—and that work is made possible by exceptional people. As we begin the new year, we’re proud to recognize two team members whose leadership and dedication help move our mission forward.

🎉 Julia Szekely has been promoted to Molecular Diagnostics Laboratory Manager. Since joining DDC Clinic in 2014, Julia has made significant contributions to patient care, research, education, and the growth of our laboratory. In her new role, she will help oversee laboratory operations and advance genetic diagnostics for rare diseases.

🎉 Bea Torres-Fults has been promoted to Family Heart Center (FHC) Coordinator. Since joining DDC Clinic in 2022, Bea has played an important role in patient care, research, and education. In this role, she will help ensure highly coordinated cardiogenetic care in collaboration with multidisciplinary clinical teams.

Please join us in congratulating Julia and Bea on their well-deserved promotions—and in supporting our shared mission to improve lives through rare disease research, care, and innovation.

01/07/2026

✨ Unveiling Our Top 30 Conditions at DDC Clinic! ✨

We are highlighting the 30 most frequent genetic conditions we see here at DDC Clinic. Each post is dedicated to raising awareness, exploring unique facts, and detailing our specialized care. Follow along to learn about these rare genetic conditions!

Condition #24 at DDC Clinic is HERC2-Related Disorder!

What is it? Also known as Autosomal Recessive Intellectual Developmental Disorder-38, this condition is caused by a change in the HERC2 gene.

Because it is an autosomal recessive condition, individuals need two copies of the mutation to be affected—one copy from mom and one copy from dad.

HERC2-Related Disorder is similar to Angelman Syndrome. Key Symptoms Include:
🔹 Intellectual disability and developmental delay
🔹 Low muscle tone and difficulty with balance
🔹 Language impairment and feeding difficulties
🔹 Behavioral issues (such as aggression and self-injury)
🔹 Seizures

Management of the condition focuses on supportive therapies and addressing the symptoms. These include developmental support services, early intervention, medications, and physical therapy.

The global prevalence is unknown, but a founder mutation has been identified in several Old Order Amish and Mennonite families. At DDC Clinic, we currently care for several patients with HERC2-Related Disorder. Our staff has collaborated on 2 research publications on this condition.

We are proud to provide specialized, comprehensive care to our patients and families affected by HERC2-Related Disorder.

01/06/2026

🧬 Understanding Mast Syndrome (SPG21) 🧬

Mast Syndrome, also known as autosomal recessive spastic paraplegia-21, is a rare genetic condition caused by a mutation in the SPG21 gene. A specific founder mutation for Mast syndrome is frequently identified within the Amish community.

Because it is an autosomal recessive condition, individuals must inherit two copies of the mutation (one from mom and one from dad) in order to be affected.

Key Symptoms:
🔹Motor Symptoms: progressive stiffness and weakness in the legs, muscle spasms, and balance and coordination issues. Individuals with Mast syndrome may eventually need walking aids or a wheelchair.
🔹Cognitive and Speech Symptoms: cognitive decline and speech challenges, such as slurred speech and speech loss.

Since there is currently no cure to stop disease progression, treatment focuses on managing symptoms and improving mobility.

At DDC Clinic, our lab offers genetic testing for Mast Syndrome through targeted variant analysis. It is also included on our Genetic Awareness Panel (GAP).

To learn more ➡️ ddcclinic.org

12/31/2025

This month we celebrated the birthday of our Family Nurse Practitioner, Dr. Stevens! Dr. Stevens is the main provider at our office in Titusville, PA. Thank you for all the work you do for our patients, providing care and support at all stages of their diagnostic journey. Happy Birthday! 🎂

To learn more about Dr. Stevens, visit ddcclinic.org/our-physicians.

12/30/2025

As 2025 comes to a close, DDC Clinic is overflowing with gratitude for your support. Because of you, our clinic continued to provide hope, answers, and personalized care for hundreds of families affected by rare genetic disorders — Amish, non-Amish, local, and international.

As we welcome 2026, we remain unwavering in our commitment: to be a gathering place of compassion, science, and faith. With your help, we’ll start the new year ready to expand diagnostic services, advance research, and support even more families who need us.

If you’re able, please make one more tax‑deductible gift before the year ends. Let’s begin 2026 strong — together.

Happy New Year from all of us at DDC Clinic! 🎉🥂

➡️ Donate Now: ddcclinic.org/make-a-donation/

12/29/2025

Wishing everyone a happy and healthy New Year! 🎊

Please note: DDC Clinic will be closed on New Year’s Day, Thursday, January 1st, 2026.

We will reopen with our normal hours on Friday, January 2nd at 9:00 am.

Happy New Year! We look forward to seeing you in 2026!

12/23/2025

🧠 Understanding KPTN Disorder 🧠

KPTN disorder is a rare, autosomal recessive condition caused by a mutation in the KPTN gene. This gene provides instructions for a protein crucial for cell growth and brain development. In order to be affected, an individual must inherit two copies of the mutation, one from mom and one from dad.

Individuals with the condition may experience:
🔹 Macrocephaly (an abnormally large head)
🔹 Intellectual disability and developmental delays
🔹 Neurobehavioral symptoms such as anxiety, stereotypic movements, and impaired social communication

Supportive treatments include physical therapy, speech therapy, and managing seizures.

DDC Clinic offers testing for KPTN disorder through Targeted Variant Analysis, and the condition is also included on our Genetic Awareness Panel (GAP).

To learn more, visit: ddcclinic.org

12/22/2025

Did you know DDC Clinic’s impact is global? Nurses from Japan recently visited our clinic to learn about diagnosing and treating Cohen syndrome, a condition that affects both Amish and non-Amish populations. geaugamapleleaf.com

This cross-cultural exchange highlights how our expertise — especially in rare genetic disorders — reaches far beyond rural Ohio. With telehealth, education, and genetic research, we’re serving families from all over the world.

Your gift today helps fund that global reach: supporting our molecular diagnostics lab, outreach, and research that benefits patients everywhere.

➡️ Donate Now: ddcclinic.org/make-a-donation/

12/19/2025

🎄 Merry Christmas and Happy Holidays! 🎄

Please note: DDC Clinic will be closed for the holiday starting at 1:00 pm on Wednesday, December 24th and will remain closed through Friday, December 26th.

We will reopen with our normal hours Monday, December 29th at 9:00 am.

We hope you enjoy this time spent with family and friends.

12/17/2025

✨ Unveiling Our Top 30 Conditions at DDC Clinic! ✨

We are highlighting the 30 most frequent genetic conditions we see here at DDC Clinic. Each post is dedicated to raising awareness, exploring unique facts, and detailing our specialized care. Follow along to learn about these rare genetic conditions!

Condition #25 at DDC Clinic is Troyer Syndrome!

What is it? Also known as Autosomal Recessive Spastic Paraplegia-20, Troyer Syndrome is a complex genetic disorder that causes the progressive breakdown and death of muscle cells and motor neurons. It is caused by a mutation in the SPART gene. Troyer Syndrome was first recognized in the Old Order Amish population in Holmes County, Ohio. There are around 40 reported cases of the condition, of which our clinic sees a handful.

DDC’s Impact:
📖 The Troyer Syndrome Story
Several years ago, a nurse practitioner in Tennessee noticed some of the children in a family had developmental delays and skeletal abnormalities. When she reached out to DDC Clinic, we suggested offering our newly developed Amish Genetic Disease Panel (now the Genetic Awareness Panel, or GAP) to the family. One of the children was tested and diagnosed with Troyer Syndrome. The family could now receive the proper care and services for their children.

🔬Research
DDC Clinic staff have collaborated on one research publication with the NIH on Troyer Syndrome.
https://pubmed.ncbi.nlm.nih.gov/18413476/

In the spring of 2025, researchers from Harvard Medical School and Boston Children’s Hospital, led by Dr. Darius Ebrahimi-Fakhari, visited DDC Clinic. While here they met with patients with Troyer Syndrome and Mast Syndrome and discussed current treatment options. The team is trying to develop treatments that not only address symptoms but also stop disease progression.
https://www.ddcclinic.org/news/harvard-researchers-visit-ddc-clinic-to-study-rare-genetic-diseases-in-amish-community/

12/16/2025

This holiday season, we reflect on the story of Robert, an Amish young man whose mysterious skin condition masked something far more serious — a brain aneurysm.

Thanks to DDC Clinic’s diagnostic expertise, his condition was detected early. When it ruptured, his mother recognized the signs and acted, leading to timely surgery and recovery. Today, Robert is back home, thriving — all because of early intervention and our deep bond of trust with the Amish community.

Your support helps us continue bridging cultural divides, delivering high-impact genetic screening, and offering life-saving care in rural Amish communities.

➡️ Donate Now: ddcclinic.org/make-a-donation/

📖Robert’s Story: ddcclinic.org/patient_stories/roberts-story/

12/15/2025

Thank you to the Chagrin Valley Times for highlighting DDC Clinic.
Sharing our story matters—because the need keeps growing.

DDC began by serving our local Amish community. Today, we support families from 35 states and multiple countries, offering world-class genetic testing, specialty care, and research in collaboration with institutions like Cleveland Clinic and Harvard Medical School.

We have expanded to Titusville, PA, bringing care closer to families who once drove nearly two hours for appointments.

But the demand is rising faster than our resources. Many families have limited financial means, and we continue to subsidize medications, supplies, and services so every child gets the care they need.

✨ If you’re considering a year-end gift, please keep DDC Clinic in mind. Your support makes hope and healing possible.

Donate today at ddcclinic.org

Address

14567 Madison Road
Middlefield, OH
44062

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+14406321668

Website

http://www.ddcclinic.org/, https://www.ddcclinic.org/make-a-donation/

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