Mysuru: JSS Academy of Higher Education and Research (JSSAHER) in association with Organisation For Rare Diseases of India (ORDI) is organising ‘Race for 7’ Marathon on Mar.3. The marathon will begin from the North Gate of Mysore Palace near Kote Anjaneyaswamy Temple at 6.30 am, said ORDI Co-Founder Prasanna Shirol.
He was addressing a press conference at a private hotel here recently and said that a lot of money is required to treat rare diseases. Hence to bring awareness about these rare diseases and to collect funds for the poor afflicted with rare diseases, the marathon has been organised.
Last year, ORDI had organised the marathon in Bengaluru and nearly 4,000 runners had participated, Prasanna said and added that ‘Race for 7’ means seven thousand rare diseases have been identified and new diseases are regularly described in medical literature. He further said that his own son has been a victim of this rare disease and hence the parents must be careful about such diseases.
JSS Associate Professor Dr. Deepa Bhat said that the number of rare diseases were increasing and added that those afflicted with this disease had to go to Bengaluru for treatment. However, since 2017 ‘Genetic Counselling Centre’ has been opened in JSS Hospital and treatment is being given. Also a Rare Disease Care Co-ordination Centre (RDCCC) at the Paediatric Department has been opened at the Hospital, she added.
There is a practice among the rural people to marry among relatives. As a result the birth of healthy future generations becomes difficult because of these consanguineous marriages. To prevent this it is important to create awareness among them, she said. There is more number of cases related to rare diseases coming from Chamarajanagar, Madikeri, Maddur and Kollegal. In the last 18 months, 275 cases related to rare diseases have been identified in Mysuru District limits alone, she said.
A poster on the marathon was released on the occasion.
Registration for ‘Race for 7’
The ‘Race for 7’ marathon, which begins at 6.30 am from the North Gate of the Mysore Palace, will pass through Devaraja Urs Road, JLB Road, Vinoba Road, Saraswathipuram Fire Brigade, Ramaswamy Circle, Chamaraja Double Road, Gun House Circle, Hardinge Circle and return to the starting point.
Those interested to participate may register their names by calling Mob: 70192-47339 or visit http://registration.racefor7.com. Those who complete the run will be presented with medals. — Narasimhamurthy, Mysore Zone Head, ORDI
This post was published on February 18, 2019 6:29 pm