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 donation of $30,000.00 to seed a Telemedicine and TSC Research Study led by Dr. John Bissler, Director of the Tuberous Sclerosis Center of Excellence Le Bonheur Children’s Hospital in Memphis.
The goal of this study is to enroll 50 affected families and to analyze the economic impact of telehealth both for the family as well as for third party payers. Dr. Bissler’s patients come from 47 states and 8 countries, and many have developmental disorders that make travel very difficult. While the distance and developmental issues pose a serious barrier to travel, getting the highest quality care for the child may simply be out of reach because of additional factors such as poverty and limited access to tuberous sclerosis centers of excellence. Through this study, Dr. Bissler is able to consult with individuals and families in their doctors’ offices and in their homes and doctor’s office utilizing video technology, bringing expert medical care where it’s needed. While his target number of families is 50, this seed money will pay for 7 families for the two-year study. While engaging in patient care, Dr. Bissler is also gathering economic data in order to be able to demonstrate that telehealth is of economic benefit to the payer and patient alike. The results of this study will likely change the direction of TSC patient care going forward by allowing families to get the very best care for their child, unrestricted by where they live or their economic status.
Since the original donation, Bcureful has been able to send another $1,132.69 in donor designated funding to support Dr. Bissler’s study. Dr. Bissler shared his gratitude for the support “Lots of people talk about doing these sorts of things, but it has a cost. Bcureful has really improved people’s lives.”
Julie Nerheim Scroggins added, “We are happy to support Dr. Bissler with this important study. We were honored when he attended our fundraising gala held last September at Tempel Farms Stables in Old Mill Creek, IL. We lined up tables under the summer skies and our guests enjoyed delicious dinner and drinks while raising money to help bring expert medical care to the home and kitchen tables of TSC families everywhere. The need for telehealth for the care of treatment of TSC is becoming evident and we are thrilled to help in a small way”.
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.
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