December 1, 2014 12:36 am
Multi-disciplinary Tuberous Sclerosis Complex Center to provide greater
access and quality of care to TSC patients throughout the Midwest
Bcureful®—a non-profit organization whose mission is to accelerate research towards a cure for Tuberous Sclerosis Complex (TSC)—presented its second donation to aid in the development of a new 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 presented a check for $40,000 to Center lead, Dr. Srishti Nangia, on December 1, 2014; this donation follows Bcureful’s inaugural gift of $20,000 in 2013 to institute the new program.
Under the direction of Dr. Douglas R. Nordli, Jr. (head of the Epilepsy Center) and his colleague Dr. Nangia, the newly developed 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.
“Tuberous Sclerosis Complex (TSC) is a genetic disorder that involves multiple organ systems and potentially can cause serious medical issues. Fortunately, new diagnostic techniques and therapeutic advances bring the promise of improved outcomes. We have an outstanding team of experts in multiple subspecialties at Ann & Robert H. Lurie Children’s Hospital of Chicago, but up until now our families have faced the challenge of juggling multiple physician visits per year while sometimes traveling long distances to receive their care. The multidisciplinary TSC clinic will allow us to provide comprehensive care in a much more efficient manner and will pave the way for new clinical trials,” Dr. Nangia explained.
Julie Nerheim Scroggins added, “We are extremely honored to make another even more substantial donation to Lurie Children’s in order to further establish the TSC Center. Our goal is to raise another $60,000 in the New Year to support the Center’s growth and improve the lives of so many affected by TSC.”
“In this increasingly cost-conscious health care environment, we believe organizations like Bcureful can uniquely provide critical support to develop novel clinical programs and launch new research initiatives,” said Dr. Nordli. “These effective partnerships will be increasingly important in the years to come and we are very excited to be participating in this ground breaking effort. For all of these reasons, we are absolutely thrilled and honored to receive this additional gift and are eagerly working collaboratively with Bcureful in building a state-of-the-art TSC program.”
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.