International Ataxia Awareness Day 25th September 2011

                            International Ataxia Awareness Day-2011

Greetings from SAMAG:

Synopsis of IAAD-2011 conducted by (SEEK A MIRACLE ATAXIA GROUP) India.

Seek a Miracle Ataxia Group – SAMAG India celebrated International Ataxia Awareness Day (IAAD) 2011 on September 25, 2011. It was a two-day event where a Tree Plantation ceremony was conducted on September 24th and IAAD celebrations were held on September 25th, 2011.
On September 24th, SAMAG India’s volunteers, along with the members of Lions Club of Charminar, jointly organized a tree plantation ceremony at the Bolarum Polo Grounds. This event was conducted to promote the ‘Green Earth Concept’ as well as the ‘International Ataxia Awareness Day (IAAD) 2011’. Members of SAMAG and the Lions Club planted over 500 saplings at the Polo grounds. The event was graced by several Army officers as well. On September 25th, SAMAG, in association with the Lions Club of Charminar, conducted “International Ataxia Awareness Day (IAAD) 2011 at Lions Bhavan, Secunderabad, Andhra Pradesh, India. The event began with lighting of the lamp by Chief guests for the event Dr. Waseem Gul Lone (Ataxia Researcher, Kamineni Hospitals, India); Lion.Ravinder Reddy (MJF); Mrs. Sunitha Anand (Lion, MJF); Lion. Mir,Yousuf Ali (President, Lions Club of Charminar) and Dr. John Thomas (Clinical Psychologist; Health & Wellness expert and SAMAG Medical Panel Advisor). Next, the SAMAG poem was recited. This poem was written by Sundar Seshan, an Ataxian who is blind and is currently living in Kerala. The poem is an outcome of Sundar’s desire to contribute something to SAMAG. Since Sundar is blind and could not type the poem, he used software that translates speech to text. The SAMAG Video and PowerPoint deck was presented followed by a skit by volunteers depicting the suffering of Ataxians. In a unique way candles were lit by volunteers, a symbolic way to spread the awareness of ataxia (like a candle which is used to spread ray of light), and also  in honour of ataxia victims as well as remembering departed souls of ataxians signifying Hope and Care by SAMAG .This was followed by SAMAG’s theme song – We shall overcome, we shall overcome.. Dr. Waseem Gul Lone (Ataxia researcher) spoke about new methods being undertaken for treating ataxia such as Stem cell therapy. He explained it;s effects and drawbacks and also spoke about a lesser known treatment called ‘RNAI treatment’. RNAI is currently in the development process and still has to clear it’s clinical trial phase. The main function of RNAI is to  stop the CAG repeats and the CAG counts in a person, so it can give proper signals to the brain to co-ordinate with the nervous system. Next, Dr. John Thomas conducted a session on ‘Stress Management’, making it the main attraction of the evening. This session was not only for patients suffering from Ataxia but was also for the general audience as well. The session was very well received by the audience. Members of the audience also took part in a Question and Answer session. Satish Kumar Pabba, SAMAG’s Chief volunteer, then conducted a session on how the public can help SAMAG and Ataxia patients. He explained the different methods to help ataxia patients and how everyone can help spread awareness about Ataxia. Satish also spoke about how one can help others in their daily lives as well. One of the honored guests from Lions Club, Lion. Ravinder Reddy (MJF) , touched by the event, extended his support by promising to provide free engineering seats to two students. He also promised to donate a wheel chair for SAMAG. This was followed by speeches by other dignitaries from the Lions Club. They extended their support by promising to spread awareness about Ataxia. The event concluded with the Vote of Thanks by Lion George who thanked the Lions Club of Charminar for their constant support., as well as our other supporting partners like National Ataxia Foundation(NAF,USA),Ataxia UK,BabelFAmily,Catholic Hyderabad Arch Diocese, Rare Diseases India,Dr,Waseem gul lone & Dr,Annie Hassan(Kamineni Hospitals India) as well as all our volunteers who worked tirelessly for conducting this event from many days, as a special way to acknowledge and thank the efforts of volunteers the appreciation letters along with gifts were handed over to Anandeshi Vinay,ES.Sai Kiran,ES.Jyotsna,Sailaja Dayanand(NGO Development manager)Manju,Janardhan,Bapji,Bunny,Maha Lakshmi and Satish Kumar(Chief volunteer of SAMAG & IBM UNIX ADMIN-MANAGER) This was followed by dinner, which concluded the IAAD 2011 event.
Best wishes,
Seek a Miracle Ataxia Group

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