BENEFACTOR

BCUREFUL

Bcureful is a 501(c) (3) non-profit organization founded to focus resources on Tuberous Sclerosis Complex (TSC) research. TSC is a genetic disorder that affects 1 in 6,000 newborns (1 to 2 million people worldwide) causing non-malignant tumors to develop in the brain and other vital organs. These tumors cause devastating effects on numerous aspects of development. Research for TSC is imperative and has led to breakthroughs in autism, epilepsy, and cancer. Bcureful is devoted to advancing research towards the cure for Tuberous Sclerosis Complex, as well as raising public awareness of the disorder and helping to bring expert medical care and support to people where they need it.

To learn more please click here to visit their website.

THE STAR OF THE SHOW – ISABEL

ISABEL’S STORY

It was confirmed, our daughter, Isabel Katherine Madison, was diagnosed with Tuberous Sclerosis Complex (TSC)– a rare genetic disorder causing benign tumors (known as tubers) to grow on vital organs throughout her body.  So it turned out Isabel didn’t just have tumors in her heart, but also on her skin, in her eyes and in her brain.  And later in life, she would be at risk of getting them in her kidneys, teeth and lungs.   I won’t go into a scientific description of this disease, but instead focus on what it meant.   It meant the Isabel would have a 90% chance of developing epilepsy in her lifetime, a 66% chance of being on the autism spectrum and also be at risk for developmental delays and behavior disorders.  It could also mean that Isabel wouldn’t experience any of those side effects, as Tuberous Sclerosis Complex is an unpredictable disease that affects each patient differently.