Today the Tuberous Sclerosis Alliance (TS Alliance) announced Ashley Pounders, MSN, FNP-C, will join the organization December 1 as its first Director, Medical Affairs. In this new position, Pounders will provide information and assistance to constituents needing help accessing clinical care and FDA-approved treatments for tuberous sclerosis complex (TSC). She will also lead development of a new online "TSC Navigator" tool to help individuals and families maneuver the intricate TSC healthcare system and proactively manage their care. In addition, Pounders will drive implementation of a "TSC Learning Healthcare System" over the next few years, working closely with TSC Clinic Directors, TS Alliance staff and community partners.
TSC, which affects 50,000 in the United States and 1 million worldwide, is a rare genetic disease that causes tumors to form in vital organs. It's also the leading genetic cause of both epilepsy and autism.
"The TS Alliance is thrilled to add Ashley to our team," said Kari Luther Rosbeck, TS Alliance President & CEO. "With her background in TSC nursing care and her experience working with payors and specialty pharmacies, she'll be able to hit the ground running from day one. We look forward to utilizing her expertise to ensure our support and medical programs always meet the needs of those we serve."
Pounders served as lead coordinator for the TSC Center of Excellence at Le Bonheur Children's Hospital in Memphis from January 2016 to June 2019. Her vast nursing experience also includes stints in critical care, trauma, nephrology and oncology. Pounders became a Family Nurse Practitioner during her time with the Le Bonheur TSC Center of Excellence.
"I truly look forward to being a part of the TS Alliance's group of professionals who continue to achieve nothing less than excellence in the quality of outcomes for those directly and indirectly affected by TSC," Pounders explained. "As the new Director of Medical Affairs, I am delighted to use my skills to lead initiatives to advance medical treatments and clinical research, provide quality education for clinical staff and bridge the gap of medical disparities by eliminating barriers inhibiting access to quality care."
The Tuberous Sclerosis Alliance is an internationally recognized nonprofit dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected. The organization accomplishes this by developing programs, support services and resource information; stimulating and sponsoring research; and creating and implementing public and professional education programs designed to heighten awareness of the disease. For more information, visit tsalliance.org o
