Report of Ataxia Awareness meeting held on Sept 23,2007 –
For raising Ataxia awareness a meeting was organized by SAMAG , Indore chapter on 23rd Sept 2007 at neurology department of M.Y. Hospital, Indore. Neurologist,Physiotheraist,Doctors,Social Groups and Ataxia patients attended the meeting.
Eminent neurologist Dr.Apoorva Pauraik addressed the meeting. In hi talk he explained about ataxia.He said that there are different types of ataxia and noe a das diagnostic tests are available to detact many types of ataxia. He emphasized that although there is no cure of ataxia till now, the patients should be encouraged for DNA testing to confirm type of ataxia because categorization and classification is the basic requirement for further research .He added that because the disease is progressive and makes the patient completely dependent in course of time , there is urgent need of researches to find cure of ataxia.
Expert Neuro-Physiotherapist , Dr.Deepak Nair , from Arbindo medical college demonstrated physiotherapy exercises useful for ataxia patient. He said that if cerebellum is not properly functioning through practice it is possible to transfer its function to some other part of brain. His speech was a hope to ataxia patients loosing co-ordination and balance .
In the end Ms, Swasti wagh ,President of SAMAG-Indore Chapter , spoke about self help group SAMAG(Seek A Miracle-Ataxia Group) which is registered in Hyderabad by an Ataxia patient Mr.Chandu George. She appealed society to come forward to support the activities of SAMAG for the welfare of ataxia patients.
Report ot Ataxia Awareness seminar by (SEEK A MIRACLE ATAXIA GROUP) Indore Chapter, on 21/02/2010 :
SAMAG ; Seek A Miracle-Ataxia Group , organized a seminar on Ataxia on 21st feb 2010 at Naath Mandir , Indore , India .
Eminent Neuro-physician ,Physiotherapist , Speech therapist , clinical optometrist and around 20 Ataxia patients from Indore and around participated in the seminar . The seminar began with the recitation of the poem written by Sunder , an ataxia patient
Neuro-physician Dr. Apoorva Pauranik emphasized the need of preparing a database of the patients to facilitate research activities on Ataxia .Physiotherapist Dr.Deepak Nair (Arvin do Hosp. , Indore) informed about the physiotherapy equipment designed byhis students under his guidance , which will activate spinal cord centers to improve co-ordination . The equipment is under fabrication and soon will be ready for experimentation. Speech therapist Dr. Siddheshwar Pandey (Arvindo Hosp , Indore) adviced patients about their speech problems . Clinical optometrist Shri Mukul Gadewadikar (Bombay Hosp , Indore) talked about the eye problems associated with Ataxia and how to take care of it . Physiotherapist Dr. Sudhir Kothari (Chouthram Hosp , Indore) demonstrated a number of simple physiotherapy exercises using the common things available at every house .Ms. Swasti Wagh , president Indore Chapter of SAMAG spoke about aims and objectives of SAMAG .
REPORT OF MEDICAL CHECK-UP CAMP ON 18/09/2010 :
SAMAG – Indore chapter organized a free medical checkup camp for Ataxia patients on 18 th sept 2010 at Sampurna Diagnostic Clinic .Dr. Kiran Jekab and Dr. Abhishek rathore of M.Y. Hospital examined all Ataxia patients under guidance of Dr. Apoorva Pauranik (M.D.,D.M. ,Neurophysician , M.Y. Hospital , Indore , M.P.) .A team of Ph.D.student of Dr.M.R. Rajeshwari (M.Sc., M.Phil., Ph.D., Department of Biochemistry, AIIMS,Dehli), Mr.Vishnu Prasad and Mr. Deepak Kumar , from AIIMS , Dehli came to collect blood samples of Ataxia patients in camp .The D.N.A. Test for confirmation of Ataxia will be performed at AIIMS ,Dehli . The D.N.A. investigation benefits the research in Ataxia and will help in finding the possible cure of Ataxia .
SAMAG-Indore chapter expresses heartiest thanx to Dr.Rajeshwari and her Ph.D. student Mr.Vishnu Swarup and Mr. Deepak Kumar from AIIMS , Delhi and Dr.Apoorva Pauranik and his collegue Dr.Kiran and Dr.Abhishek of Neurology Deptt. Of M.Y. Hospital , Indore for clinical examination of Ataxia patients.We are very much thankful to Dr.Sodhani of Sampurna Diagnostic Clinic for accommodating the cap activity in their campus We are also thankful to CHL Apollo , Indore for permitting the use of their Centrifuge and cold storage .
Lastly SAMAG is greatful to SEVA branch of Bharat Vikas Parishad for extending help and co-opration in arranging this camp.
Report of Physiotherapy Camp on 9/04/2014:
SAMAG-Indore Chapter organized physiotherapy camp with the help of Bharat Vikas Parishad , Indore at Sputnik Bhavan,Press Complex,Indore on 9th April 2014.
In the camp Dr.Apoorva Pauranik distributed DNA test reports from AIIMS,Delhi to ataxia patients.
Dr.Pankaj Jain , neuro-physiotherapist from Rajasthan advised physiotherapy exercises suitable to ataxia patients.
Report of Brain Awareness Camp on Rare Diseases And Key Psychological Issues of Caregivers on 1/03/2015:
An awareness camp on rare diseases was organised by Seek a Miracle Ataxia Group
(S.A.M.A.G) in association with National Brain Research Centre (N.B.R.C) in Indore on 1st March 2015. The camp was attended by over 100 people and arranged at Nath Mandir,Indore. The participants included patients of MS, MD, Ataxia and spinal injury, caretakers and general public.
Ms. Swasti Wagh,President – SAMAG,Indore Chapter,inaugurated the camp by addressing the audience.
Dr. Apoorva Puranik
One of the key speakers of the event, Dr. Apurv Puranik is a well known neurologist
based in Indore. He emphasised on the need of awareness and education of rare
diseases among the population . his speech also stressed the need of skill development of the especially abled. He also encouraged public to think about starting and helping sheltered workshops in India to help the patients of rare diseases .
Mrs. Tapati RoyYadav
A psychologist by profession, Ms.Tapati’s speech focussed on the nature of psychology and what basically goes through the minds of patients and caretakers specially.
Mr. Prathmesh Desai
National Secretary, Viklanga Sahayata Seva of Bharat Vikas Parishad, Mr. Desai gave an insight to the programs they have conducted and upcoming for specially abled patients.
Mrs. Kirti Dike
Mrs. Kirti heads the women’s division of Lions Club Indore. She shared the problems
and issues she faced with her daughter who is suffering from spinal bipedia . She motivated all the care givers and family of patients by giving examples from her experiences .
A quiz competition was organised for all the participants. The questionnare and answer sheet were distributed along with the registration kit. Top three scorers were given prizes.