– Totally Super Cool Encourages Conversations Between Caregivers and Children About Living with Tuberous Sclerosis Complex (TSC) –
– Book Will Be Launched at the 2022 World TSC Conference –
BETHESDA, Md., July 21, 2022 /PRNewswire/ -- Nobelpharma America, LLC, a pharmaceutical and medical device company headquartered in Bethesda, Maryland, created a new storybook to encourage conversations between caregivers and their children with facial angiofibroma due to tuberous sclerosis complex (TSC), a rare genetic disease that affects approximately one in 6,000 live births. Called Totally Super Cool, the book is being released for the first time at the World TSC Conference at the Hilton Anatole Hotel in Dallas, Texas, on July 29, 2022.
"At Nobelpharma, we are truly inspired by the experiences of children, and their families, who live with TSC. Totally Super Cool illustrates ways children may feel more comfortable talking about their disease with others," said Yoshiki Kida, President and CEO of Nobelpharma America. "By finding fun words for the acronym TSC to help kids reframe talking about TSC, such as Totally Super Cool, our goal is to show all the children with TSC that their accomplishments are what make them special and unique."
Developed for children at a reading level of 8-12 years old, Totally Super Cool is the story of Tori and Tommy, a sister and brother, both of whom have facial angiofibroma associated with TSC. The storybook follows the sister-brother duo when they are at school, with their friends and when they visit their healthcare specialists to learn how to take special care of themselves in their journey with TSC. The message carried throughout the book is that Tori and Tommy are totally super cool kids despite the challenges their condition may present.
The TSC Alliance and its members provided input about what would resonate with children with TSC and their families. "In addition to sharing the routines and feelings that children with TSC have, Tori and Tommy's story also emphasizes the importance of parents and caregivers having positive discussions with their kids about living with TSC," said Kari Luther Rosbeck, President & Chief Executive Officer of the TSC Alliance.
TSC is a rare genetic disease that affects approximately one in 6,000 live births. Nearly one million people worldwide are estimated to have TSC, with approximately 50,000 in the United States. TSC causes non-cancerous tumors, or hamartomas, to form in vital organs, including the skin. TSC may also cause facial angiofibromas, which are pink or red bumps usually located on the cheeks, nose, and chin that may cause bleeding, itching, redness, and significant disfiguration without treatment. Many individuals with TSC also present with autism, epilepsy, and other neuropsychiatric disorders.
About Nobelpharma America
Nobelpharma America, LLC (NPA) is focused on the commercialization of pharmaceuticals and medical devices that expand treatment options for people with rare diseases. In 2019, NPA became the first wholly owned global subsidiary of Nobelpharma Co., Ltd., which is based in Tokyo. The company, which is named after Alfred Nobel, remains committed to honoring his innovative and scientific legacy by developing treatments for diseases that often go overlooked because of the small number of individuals affected. For more information visit nobelpharma-us.com.
SOURCE Nobelpharma America
World TSC Conference attendees will be able to sign up for a free copy of the book at booth #8 on July 29 and 30, from 10 a.m.-5 p.m.