News

Researchers Correlate Spinal Muscular Atrophy Disease Expression with Haplotypes

STRASBURG, PA- A natural history study has provided the first comprehensive clinical description of spinal muscular atrophy (SMA) within the Amish and Mennonite communities and correlates ancestral chromosome 5 haplotypes and SMN2 copy number with disease severity. SMA is a devastating genetic disease that affects the motor neurons that control movement, eating, and breathing. It […]

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New Nusinersen Drug Delivery Method Identified for Spinal Muscular Atrophy Patients

STRASBURG, PA- A new report has identified an alternative method to deliver nusinersen to patients with spinal muscular atrophy (SMA) using a subcutaneous intrathecal catheter system (SIC) configured by connecting an intrathecal catheter to an implantable infusion port. SMA is a devastating genetic disease that leads to progressive degeneration of motor neurons that control movement, […]

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Register Now! Clinic for Special Children 5k

Please join us for our FIRST 5K Run/Jog/Walk to benefit Clinic for Special Children! $100 CASH PRIZE for overall top male & female runners! Enjoy a 5K, free refreshments, a silent auction, and crafts for kids among the many family-friendly activities planned for the day! Proceeds support the mission of Clinic for Special Children, a […]

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Enjoy CSC’s Summer 2018 Newsletter!

  In this edition of the CSC newsletter, read about the Martin family’s inspiring journey with Kleefstra Syndrome. Also in this issue is the story of Margaretha whom the Clinic met while on a medical mission to Mexico and Drs. Matt Demczko and Mike Fox returning to CSC. Additional spotlights include our upcoming events, Clinic […]

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Amish Nemaline Myopathy Natural History Study Finds Promise for Gene Therapy Treatment

STRASBURG, PA- A new comprehensive natural history study about Amish nemaline myopathy (ANM) in the Old Order Amish population focuses on the promise of gene therapy for this lethal disorder. Amish nemaline myopathy (ANM) is an infantile-onset muscle disease linked to a mutation of the TNNT1 gene. The study summarizes genealogical records, clinical data, and […]

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‘Clinic Seeks Solutions for Rare Gene Disorder’ by Lancaster Farming

Eugene and Jeanette Horning sat down with Lancaster Farming news to talk about their unique journey raising a special child living with a random gene deletion, only found in 15 other people worldwide at the time of her diagnosis. Olivia is missing a gene that facilitates the brain-muscle connection which requires her to process information […]

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Thank you to Dr. Katie B. Williams for her service to CSC

Dr. Katie Williams spent her last day at CSC on June 1st, traveling this week to continue her pediatric practice in her home state of Wisconsin. We would like to express our gratitude to Dr. Williams for her four years of invaluable service to the Clinic for Special Children through her devotion to the patients and families […]

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Register here for our FIRST annual Clinic for Special Children 5K Run/Walk/Jog – September 22

Please join us for our FIRST 5K Run/Jog/Walk to benefit Clinic for Special Children! Enjoy a 5K, free refreshments, a silent auction, and crafts for kids among the many family-friendly activities planned for the day! Proceeds support the mission of Clinic for Special Children, a medical home for children living with rare genetic disease. Register […]

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CSC featured in Boston Globe Media’s STAT for role in helping to create pathways for access to specialized care

Published by STAT of Boston Globe Media on May 8, 2018, CSC and Dr. Kevin A. Strauss were featured in a national article highlighting financial barriers the Plain community faces in accessing specialized medical therapies and featuring CSC’s unique role in creating pathways to access for both patients of CSC and the Amish and Mennonite […]

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A New Service Available: SMA Carrier Testing

After months of development, the CSC laboratory is proud to announce two new tests for spinal muscular atrophy (SMA), tests that have significant implications for the services and care we offer to the patient families we serve. SMA is a devastating genetic disease that is found within the Plain community but also diagnosed world wide. […]

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