Multi-disciplinary Tuberous Sclerosis Complex Center provides greater
access and quality of care to TSC patients throughout the Midwest
CHICAGO, IL – Bcureful—a non-profit organization devoted to advancing research towards the cure for Tuberous Sclerosis Complex (TSC), as well as raising public awareness of the disorder while helping to bring expert medical care and support to people where they need it—presented a third donation of $35,000 to bolster progress at the Tuberous Sclerosis Complex Center at Ann & Robert H. Lurie Children’s Hospital of Chicago. Bcureful Founder and Chairman, Julie Nerheim Scroggins, along with several Bcureful Board members and donors presented this most recent check to Center lead, Dr. Srishti Nangia, on October 19, 2015. Bcureful’s inaugural gift of $20,000 helped jump-start the TSC Center in 2013 and Bcureful has since dedicated a total of $95,000 to the Center.
Under the direction of Dr. Douglas R. Nordli, Jr. (Head of the Division of Epilepsy) and his colleague Dr. Nangia, the expanding TSC Center offers a multi-disciplinary clinic that improves access and quality of care for TSC patients and their families living in the Midwest. Lurie Children’s is considered one of the top children’s hospitals in the country and is a recognized leader in pediatric patient care, research, education and advocacy – the TSC Center adds to its reputation for innovation and excellence.
“Our TSC Clinic features multidisciplinary care for the diagnosis and treatment of this rare genetic disorder that causes a range of symptoms including seizures, developmental delays, intellectual disabilities and autism. Held on the first and third Tuesday of the month, the multidisciplinary TSC Clinic has served approximately 50 patients since its inception and is currently booked until February,” said Dr. Nangia.
Two clinic office coordinators, Clara Samaniego and Krystale Shavers coordinate appointments for outpatient office visits with multiple subspecialties, EEG and imaging. The team also includes TSC clinic nurse Debbie Williams, who has extensive epilepsy experience. Families receive additional support from Josephine DeLira, the epilepsy center social worker, and Robert Blaufuss, an educational specialist.
“As we look ahead, we hope to create a psychosocial program that will help provide support and meet the needs of the families. Another goal is to contribute to clinical research that will help prevent and treat epilepsy in patients with TSC. We also look forward to exploring options to collaborate on telemedicine initiatives,” Dr. Nangia further explained.
Julie Nerheim Scroggins added, “We are extremely honored to make another even more substantial donation to Lurie Children’s in support of the TSC Center. The need is clearly evident given the number of families already utilizing its services. We’re thrilled to be a part of its growing success.”
Bcureful is a 501(c) (3) non-profit organization founded to focus resources on Tuberous Sclerosis Complex, or TSC. TSC is a genetic disorder that affects 1 in 6,000 newborns causing non-malignant tumors to develop in the brain and other vital organs. Although the growths are almost always benign, they can cause devastating effects on multiple aspects of development. It is estimated that 1 to 2 million people worldwide have TSC. Research for TSC has led to breakthroughs in autism, epilepsy and cancer.