TSC Alliance® Establishes Steven Sparagana Legacy Fund

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May 16, 2024, 08:00 ET

DALLAS, May 16, 2024 /PRNewswire/ -- Today, the TSC Alliance^® announced it has established the Steven Sparagana Legacy Fund to honor the upcoming retirement of Steven Sparagana, MD, who served as Tuberous Sclerosis Complex (TSC) Clinic Director at Scottish Rite for Children in Dallas for 24 years and as a professor in the department of neurology at UT Southwestern Medical Center.

"The TSC Alliance is thrilled to create this fund to recognize Dr. Sparagana's multiple contributions to TSC clinical care and research," said Kari Luther Rosbeck, TSC Alliance President & CEO. "He also served on our organization's Professional Advisory Board, and his early research helped create the TSC Natural History Database, which captures patient data to document the impact of the disease on a person's health over his or her lifetime. The database now houses information on more than 2,600 people with TSC. His impact on the TSC community has been tremendous."

In 2004, Dr. Sparagana's original $141,307 grant from the TSC Research Program at the U.S. Department of Defense was the genesis of the TSC Natural History Database. He has since served as a member of the TSC Alliance's Natural History Database/Biosample Repository Steering Committee, and Scottish Rite for Children was one of the original pilot sites for the database. His impact, particularly as it pertains to the Natural History Database and pivotal clinical trials, has been instrumental in improving quality of life for individuals with TSC.

"Dr. Sparagana's forward-thinking vision coupled with his kind and collaborative style enabled him to be a contributor and leader of multiple clinical research projects," said Steven L. Roberds, PhD, TSC Alliance Chief Scientific Officer. " Additionally, in 2012, he chaired the development of a new section of TSC clinical consensus guidelines focused on the importance of integration of care to treat the 'whole person' living with TSC."

The Steven Sparagana Legacy Fund will provide an ongoing source of revenue in support of the Natural History Database and Biosample Repository as a tribute to his contributions to the creation and ongoing success of these invaluable tools. Supporters can easily contribute online.

"I am grateful to the TSC Alliance for this honor. It has been a privilege to serve children, families and the community affected by tuberous sclerosis complex," said Dr. Sparagana. "The Natural History Database and Biosample Repository have provided substantial contributions to TSC basic science and clinical research, and I wholeheartedly support these important endeavors. I am also thankful to Scottish Rite for Children, which has generously supported the hospital's TSC Clinic for more than 30 years."

About tuberous sclerosis complex

TSC is a rare genetic disease that affects people at all stages of life. TSC causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin, eyes and lungs. Changes in the brain caused by TSC have the biggest impact on quality of life, from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism. In fact, TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder.

About the TSC Alliance

The TSC Alliance is an internationally recognized nonprofit that improves quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support. For more information, visit tscalliance.org.

About Scottish Rite for Children

Scottish Rite for Children has been dedicated to giving children back their childhood for more than a century. The institution is a world-renowned leader in the treatment of pediatric orthopedic conditions, such as scoliosis, clubfoot, hand differences, hip disorders, limb lengthening and reconstruction, sports injuries and fractures, as well as certain related arthritic and neurological disorders and learning disorders, such as dyslexia. The organization conducts innovative research and provides high-level education opportunities for medical professionals around the world. Scottish Rite operates two campuses, including a hospital in Dallas, Texas, and an ambulatory surgery center in Frisco, Texas, and is known for being a bright, child-friendly place that does not look, feel or smell like a health care institution. Patients receive treatment regardless of their family's ability to pay. For more information about services available at the Dallas or Frisco campuses, volunteering or donating, visit scottishriteforchildren.org.

CONTACT
Jaye Isham
Chief Outreach Officer
TSC Alliance
(301) 562-9890 | [email protected]

SOURCE TSC Alliance