You Can Help Provide Bright Futures for Children Like Kaiden

The Hurst family graciously wrote their first-hand experience with the Clinic for Special Children for our Annual Giving Appeal.

You can read their heart-touching story below, with an opportunity to give children, like Kaiden, a bright future.

 

Greetings from the Hurst Family!

As our family says goodbye to an eventful year (or maybe I should say an eventful two years), this November marks our son Kaiden’s second birthday, the second year of his journey with nephrotic syndrome, and a life-changing kidney transplant.

Choosing the Clinic for Special Children (CSC) team to help us through this has been the decision that most positively impacted the care that Kaiden has received. The Clinic has provided him with outstanding medical treatment and we are truly grateful to each doctor, nurse, therapist, and transplant team member that has been with us along the way. We believe our Lord God provided a healing touch through their hands…

Continue reading Kaiden’s story HERE

 

How Can You Give?

Make a donation online: Give Here

Mail your gift or make a credit card payment: Click Here

Dr. Kevin A. Strauss named 2018 Rural Health Community Star

Each year the National Organization of State Offices of Rural Health (NOSORH) organizes National Rural Health Day, an annual day of recognition for those who serve the vital health needs of nearly 60 million people residing in America’s rural communities, estimated to be 1 in 5 Americans.

In 2015, NOSORH launched the “Community Star” recognition to honor individuals and organizations that make a positive impact on rural lives. We are proud to announce that our very own Medical Director, Dr. Kevin A. Strauss, was one of these national community stars, and one of 4 from Pennsylvania.

Read more on this at Penn State News HERE

Researchers Find Multisystem Disorder Caused by CCDC47 Variants

STRASBURG, PA & TOPEKA, IN- Researchers and clinicians through a multicenter collaboration have identified a novel multisystem disorder caused by bi-allelic variants in the CCDC47 gene. Their findings are reported in The American Journal of Human Genetics. CCDC47 is responsible for encoding an essential calcium (Ca2+)-binding protein involved in embryogenesis and development. Calcium signaling is essential for various cellular processes including muscle contraction, secretion regulation, cell proliferation, and gene transcription. In this study, detailed clinical characterization and functional studies were performed on four unrelated individuals with a complex multisystem disorder characterized by woolly hair, liver dysfunction, itchy skin, unusual facial features, low muscle tone, and global developmental delay.

Read the full press release here

Read the paper here

Over $62,000 Raised Through 2018 ExtraOrdinary Give!

On Friday, November 16, 2018 over 210 Extraordinary people made a donation to the Clinic for Special Children with over $62,000 raised in just 24 hours! The community shattered our goal of $45,000 for this year’s ExtraGive! In 2017, $40,000 was raised through the ExtraGive for the Clinic.

The ExtraOrdinary Give is Lancaster County’s largest day of online giving. This year over $10.2 million total was raised for over 500 local non-profit organizations.

 

Visit the link here to view more photos from this Extraordinary day!

 

Researchers Find Novel Mutation Affecting YARS Causes Multisystem Disease

STRASBURG, PA- Researchers have identified a novel missense mutation in tyrosyl-tRNA synthetase (YARS c.499C>A, p.Pro167Thr) that causes a severe recessive disorder in affected individuals. The study, led by clinicians, researchers and collaborators of the Clinic for Special Children in Strasburg, PA, appears in Human Molecular Genetics. The report includes detailed clinical characterization of seven related Amish children who were homozygous for the variant. The children all exhibited poor growth, developmental delay, abnormal brain white matter, hearing loss, involuntary eye movements, progressive cholestatic liver disease, pancreatic insufficiency, hypoglycemia, anemia, intermittent excess of protein in urine, recurrent bloodstream infections, and chronic pulmonary disease.

 

Read the full press release here

Read the paper here