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4/29/19news article

Dayton Children's receives designation from the Tuberous Sclerosis (TS) Alliance

two Dayton Children's physicians join TS Allliance board of directors

Dayton Children's tuberous sclerosis clinic received designation from the TS Alliance, joining a network of 64 TS clinics in the United States and a handful internationally. The TS Alliance also welcomed Rajkumar Agarwal, MD, and Marvin Miller, MD, to its Board of Directors.

Tuberous sclerosis, also called tuberous sclerosis complex (TSC), is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs and skin. As a result, TSC can be unrecognized or misdiagnosed for years.

Through a collaboration with the TS Alliance, Dayton Children’s provides an entire multidisciplinary team of pediatric experts to care for children with TSC. This specialty team includes neurology, neurosurgery, hematology-oncology, genetics and ophthalmology.

Dedicated social workers provide support to families of TSC patients. A school nurse liaison works with the child’s school system to provide seizure education, identify the academic needs of the child and align the medical and educational aspects of the child’s care.

Dayton Children’s is working to further research efforts that may one day lead to better treatment and cures for TSC. Led by neurosurgeon Rob Lober, MD, PhD, the hospital joined The Children’s Brain Tissue Consortium to launch a first-of-its-kind Pediatric Brain Tumor Atlas.

about the Tuberous Sclerosis Alliance

The Tuberous Sclerosis Alliance is the only U.S.-based nonprofit dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those effected.  Founded in 1974, it works to improve quality of life for individuals and families affected by TSC by stimulating and sponsoring research; creating programs, support services and resource information; and developing and implementing public and professional programs designed to heighten awareness of the disease.  For more information, visit www.tsalliance.org.

persevering past brain surgery

The Taylors never heard of Chiari malformation until it changed their son’s life, resulting in not one, but two complex brain surgeries.

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