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 | jisham@tscalliance.org
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SOURCE TSC Alliance