he CureSurf1 foundation held a fundraiser to support research to find a cure for Surf1 Leigh Syndrome, a rare disease that lacks a cure at this time. The High Octaves group from New Jersey performed a fabulous musical concert. The event led by Saroja Bamiela Sankaran was held at the Ashland High School on May 18, 2019.  The concert featured lovely musical numbers by very talented performers and was one of the finest musical programs. 

Kshithi Karthikeyan from New Jersey suffers from this condition.  SURF1 is the name of a critical gene that takes part in oxidative phosphorylation, which is the process that converts the food we eat into energy.  This activity takes place in the mitochondria, which serve as the power plant in each of our body’s cells. A defect in the SURF1 gene prevents mitochondria from producing enough energy for cells in the body to function normally, leading to a rare and progressive genetic disease called Leigh syndrome.

Leigh syndrome is a severe neurodegenerative disease which typically presents itself during infancy or early childhood and offers a particularly grim prognosis. The condition is characterized by a progressive loss of mental and movement abilities (psychomotor regression) which eventually leads to vision, renal, cardiac and respiratory complications, typically resulting in death in a few years.

It was really heartbreaking to think that the lovely young child ,Kshithi suffering from this condition.  Jeyanthi Ghatraju introduced Dr. Saravanan , a trauma surgeon from New York who is working with the family. 

Divya, mother of Kshithi made an impassioned plea for funds. “The UT Southwestern research group offers the most hope. By funding the research we hope Kshithi will get the help she needs” said Dviya. Ranjani Saigal ran the pledge drive and over $10,000 was raised that evening. 

For more information on the CureSurf1 foundation  and donate to the cause please check out their website at https://www.curesurf1.org/