Run organised forraising awareness about Lysosomal Storage Disorders

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NCC Navy CEG (College of Engineering, Guindy) along with Lysosomal Storage Disorders Society (LSDSS) organise the 3rd edition of Halo Wings- an awareness run for lesser known disorders

To commemorate the Rare Disease Day (28th February), the NCC Navy CEG (College of Engineering, Guindy-Anna University) together with Lysosomal Storage Disorders Society (LSDSS) organised a run in support of Lysosomal Storage Disorders (LSDs) patients. Halo Wings is an annual run organised by the prestigious NCC Navy CEG for bringing the spotlight on lesser known conditions. This year it was aimed at raising awareness and funds for LSDs- a segment of 50 rare disorders. Conducted at Anna University sports ground, the 9.03 km run saw the participation of NCC cadets, patients and their families, eminent doctors and the renowned actor and cause ambassador Karthi.

Commenting on the impact of treatment on the life of a patient, Dr. A.T. ArasarSeeralar (Director & Superintendent, ICH &HC) said,“LSDs are a group of around 50 rare disorders which result due to lysosomal (enzymes which break large molecules in cells into fragments) dysfunction. The condition of the patients suffering from these disorders are severe and chronic and they usually lead debilitating lives. However, treatment is available for some of the disorders like MPS (type I, II, III, IV & VI), Gaucher, Pompe, Fabry which has proven to have a very positive impact on a patient’s life. The run which saw the participation of some of such patients was certainly an illustration of how treatment can help them lead almost normal lives.”

Commenting on the sameDr. K Pramila (Professor of Biochemistry, ICH & HC)said, “It is very important for patients to receive the available treatment in order to prevent their condition from deteriorating and to ensure that they are able to lead quality lives. Unfortunately, the treatment is very expensive and hence, is unaffordable. Here, the government would have to take certain concrete steps to provide treatment to the patients without further delay. A run focusing on the various aspects of LSDs including treatment is a good platform to bring the attention of the relevant policy makers towards these disorders. An event of this scale with participants from across the state showcases that people are sensitive to this issue and identify with it.”

Further elaborating, Dr. T.V. Geetha (Dean, CEG) said, “We started Halo Wings in 2016 as an initiative to raise awareness about certain disorders and to showcase various issues related to them. Over the past three years, the event has remarkably developed in scale and has seen increased participation. We chose LSDs as the focus of this year’s run as we believe that this segment of rare disorders needs its due attention and that it is time to recognise the burden imposed by these disorders on the patients.”

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