September 25th a new day with new hopes and a day dedicated to raising awareness on ataxia, Here’s wishing all a happy (International Ataxia Awareness Day) 2013, please join hands and raise awareness on ataxia by observing IAAD .
IAAD : The “International Ataxia Awareness Day” is an international effort from ataxia organizations around the world to dedicate September 25th as International Ataxia Awareness Day. The goal of IAAD is for any individual to create awareness about ataxia through educating a group of people by speaking at a Medical community or its related conference group, or raise financial support for this cause.
Ataxia’s : The ATAXIA’s are rare, progressive disorders of the nervous system affecting balance and coordination. People of all ages and races are affected, males and females are affected equally.
Ataxia’s can be Inherited or sudden(Recessive) due to faulty genes, There are many different types of identified ataxia’s, In India the most common are Spino cerebral ataxia’s (SCA Type 1 to 19) and the other common identified is Friedreichs ataxia.
Scenario in India, Ataxians / Patients perspective : Due to Lack of Patient care / Information / Effective management / Counseling, Many Ataxia Patients suffer silently.
Questions from Ataxians to medical community :
Ø Are there any New medical Trial treatments available here in india for ataxians?
Ø A chennai based pharmaceutical company by name ORCHID PHARMA is taking up research studies on Friedreichs ataxia(FA) similarly Are there any Research studies being carried out here in India by any Medical Institute ya Pharmaceutical company to cure ataxia’s?
Ø A new Trial medicine for treating Friedreich’s ataxia (Clinical Phase Trial-2) is underway in Europe and USA but not yet available in India, as the concerned California, US based pharmaceutical company Has asked us to approach through a process by Respective medical Institute/doctors /pharmacy companies based here in India and then this clinical Trial phase-2 medicines will become available here for Indian ataxians, The name of the drug is HDAC Inhibitors, the name of the drug is RG2833 and the pharmaceutical company name is REPLIGEN.
Ø Lastly an sincere appeal by SAMAG(An Indian Ataxia Patient Support group) request on behalf of Indian ataxians, we appeal to respected Medical community/Institutes and Pharmaceutical companies to encourage and prefer research studies to be carried out here in India in curing ataxia’s a which are a rare set of neuro muscular degenerative disorders so we can be recruited in this studies and get benefited.
wishing all happy IAAD 2013