CAMP & GENETIC COUNSELING:
Genetic screening camps are conducted all over TamilNadu with well-equipped team of doctors, researchers, counselors, social workers, technicians, volunteers etc., for identification and prevention of Duchenne Muscular Dystrophy in the State of Tamilnadu, (Govt. funded project)
Below given table contains the details of Camps & Genetic Counseling conducted in which kids/adults who were registered with symptoms of neuromuscular disorders were screened to identify the type of Muscular dystrophy by Genetic & Molecular Diagnosis. A few families, with already identified Duchenne kids, were counselled for appropriate management and prevention of the disease.
|Dindigul||DDHS Office, Dindigul||3rd Genetic Counseling|
|7-June-2017||Namakkal||SSA Office, Namakkal||2nd Genetic Counseling|
|12-May-2017||Perambalur & Ariyalur||Corporation Middle School, Perambalur East||2nd Genetic Counseling|
|11-May-2017||Trichy||Deputy Directorate of Health Services, Trichy.||4th Genetic Counseling|
|10-May-2017||Trichy||Deputy Directorate of Health Services, Trichy.||3rd Genetic Counseling|
|11-April-2017||Kanniyakumari||St.Aloysius Hr. Sec. School, Nagarkovil, Kanniyakumari||1st Screening Camp & 1st Genetic Counseling|
|8-April-2017||Erode||Primary Health Care Center, Near Murugan Temple, Thildal, Erode.||1st Genetic Counseling|
|22-mar-2017||Cuddalore||NLC Girls High School, Mandharakuppam, Cuddalore.||1st Screening Camp & 1st Genetic Counseling|
|16-mar-2017||Pudhukottai||Block Resource Center, opposite to LIC building, Pudhukottai.||1st Genetic Counseling|
|16-mar-2017||Thiruvarur||Gowrisamy Municipality Middle School, Thiruvarur.||1st Genetic Counseling|
|16-mar-2017||Pudhukottai||Block Resource Center, opposite to LIC building, Pudhukottai.||1st Screening Camp|
|15-mar-2017||Thanjavur||Old disability building, near Thanjai periya kovil, Thanjavur.||1st Genetic Counseling|
|15-mar-2017||Thanjavur||Child welfare home, Thanjavur.||1st Screening Camp|
|11-March-2017||Thiruvannamalai||Town hall middle school, Thiruvannamalai||1st Genetic counseling|
|4-March-2017||Namakkal||SSA office, Namakkal||1st Genetic counseling|
|2-March-2017||Nagapattinam||Municipality Primary School, Keeraikollai street, Near Veppalaikaali Amman Kovil, Nagapattinam.||1st Screening Camp|
|1-March-2017||Thiruvarur||Gowrisamy Municipality Middle School, Thiruvarur.||1st Screening Camp|
|28-Feb-2017||Thiruvallur||Municipality Hr. Sec. School, Near Thiruvallur bus stand, Thiruvallur.||1st Screening Camp|
|23-Feb-2017||Karur||SSA office, Karur||1st Genetic counseling|
|21-Feb-2017||Madurai||Corporation middle school, Kamarajar saalai, Madurai||3rd Genetic counseling|
|16-Feb-2017||Sivagangai||RRRK middle school, Sivagangai||1st Screening camp|
|16-Feb-2017||Thiruvannamalai||Town hall middle school, Thiruvannamalai||1st Screening camp|
|15-Feb-2017||Vellore||Muslim govt higher school, Vellore||1st Screening camp|
|15-Feb-2017||Virudhunagar||TVS middle school, near old bus stand, Virudhunagar||1st Screening camp|
|11-February-2017||Madurai||SSA Madhurai||2nd Genetic Counseling|
|1-February-2017||Villupuram||Block Resource Center (BRC), Thirukovilur, Villupuram||1st Genetic Counseling|
|31-January-2017||Villupuram||Block Resource Center (BRC), Thirukovilur, Villupuram||1st Screening camp|
|28-January-2017||Ramanathapuram||Vallal Paari Middle School||1st Screening camp|
|28-January-2017||Chennai||Nishta integrated neurodevelopment center. No 1 sambhandam street, off gn chetty road, tnagar. Chennai 17, Next to hotel peninsula||1st Genetic counseling|
|27-January-2017||Thootukudi||Training hall, seena, vaana school campus, near old bus stand, Thootukudi district||1st Screening camp|
|12-January-2017||Kanchipuram||St. Columbus higher secondary school, old bus stand opposite, Chengalpattu||1st Screening camp|
|11 January 2017||Namakkal||SSA Office||1st Screening camp|
|11 January 2017||Karur||Teresa Thuvakkappalli||1st Screening camp|
|20 December 2016||Krishnagiri||Block Resource Center (BRC)||1st Screening camp|
|8 December 2016||Erode||GTS School Campus||1st Screening camp|
|29 November 2016||Dharmapuri||Municipality Primary School||1st Screening camp & 1st Genetic Counseling|
|24 November 2016||Ariyalur||DDAWO Office||1st Screening camp|
|24 November 2016||Perambalur||Girls High School||1st Screening camp|
|24 November 2016||Perambalur & Ariyalur||Girls High School||1st Genetic Counseling|
|23 November 2016||Trichy||Deputy Directorate of Health Services, Trichy||2nd Screening camp|
|10 November 2016||Theni||Govt Hr. Sec. School – SSA||1st Screening camp & 1st Genetic Counseling|
|8 November 2016||Dindigul||Deputy Directorate of Health Services, Dindigul||2nd Screening camp & 2nd Genetic Counseling|
|25 October 2016||Salem||Boys High School||1st Screening camp|
|22 October 2016||Trichy||Deputy Directorate of Health Services, Trichy||2nd Genetic Counseling|
|28 September 2016||Dindigul||Deputy Directorate of Health Services, Dindigul||1st Screening camp & 1st Genetic Counseling|
|22 & 23 September 2016||Madurai||Chief Education Office, near Thamukkam ground, Madurai||1st Screening camp & 1st Genetic Counseling|
|23 & 24 August 2016.||Trichy||Deputy Directorate of Health Services, Trichy||
1st Screening camp & 1st Genetic Counseling
WORLD DUCHENNE AWARENESS DAY 2017 – Thalirum Tharunangal
This year’s World Duchenne Awareness Day was special to all of us. We had our kids and their perform at length on stage. This day every year marks a day to honor the immense dedication of these parents and the health professionals throughout the world.
The awareness day celebrations started with the DMD kids from different parts of the state talking about their dreams and their aspirations. We were able to capture few of those dreams here https://www.youtube.com/watch?v=f3LPRHFM91U. Generally there are events every year to celebrate with the kids and their parents where professionals would perform. This time around we had planned to actively involve the parents their families and their kids. There was a conspicuous consent when the idea was floated around. Then the practice sessions for the parents and the kids were planned out meticulously and the feedback was heartening and seeing their participation felt like they were over the moon the whole week until the event. The event had the kids perform to few Indian songs, one song on the grea Sufi Saint Khwaja Moinuddin Chisti. The mothers had a ball in dancing to trending tunes of 2017 and the father showcased their free spirited dancing flair on stage.
This to us marks an important event for the Duchenne community in general and also to understand the impact of Art on Mankind. The glee in their faces spoke a thousand words. It is an achievement of the parents who are in tremendous pressure and in a sober situation, to come out and perform. The event was named as ‘Thalirum Tharunangal’, which literally translates to budding moments. It is just to convey that there exists just the moments of their kids with them. The event was something of a reminder of our lives and the necessity to act with understanding and reflect as much as we can. The event was graced by Mrs. Mohana of Sharp Industries, KG Bhakthavatsalam of KG Hospitals and Mrs. Rohini of Avinashilingam University. We would like to thank all the volunteers and the other dignitaries for their presence.
MD CARE – October 2016
As per Global recommendations, the best management of DMD requires a multidisciplinary approach with complete professional care. We conducted Multidisciplinary Care camps on 20th & 27th October 2016 for Children affected with Duchenne Muscular Dystrophy. Initially consent forms were obtained from the parents of the Duchenne kids for participating in this MD Care programme which was followed by a registration by the parents. Totally 19 children participated in these sessions which were started by Investigations including Blood, ECG, ECHO, X-ray and PFT (spirometry). This was followed by Clinical Evaluation done by specialists such as Neurologist, Cardiologist, Paediatrician, Physiatrist, Gastroenterologist, Ayurvedic physician and Physiotherapist. The disease progression is then consolidated.
WORLD DUCHENNE AWARENESS DAY – September 2016
World Duchenne Awareness Day was celebrated in Jenny’s club lawn on 10th of September, 2016, for the convenience of the children as 7th September was a working day. Thirty two children were expected and out of which 29 had turned out. The chief guests were Miss. Sree Priya from Trichy, Mr. Raja Krishnamoorthy from Chennai and Dr. K.C. Ramaswami from Kurinji Hospital, Coimbatore. Children assembled around 3:00 pm and they were provided with refreshments. Then they started decorating their cars for the race. The parents, children, volunteers and the team members were given a chit of paper in which they were asked to write a prayer for the children, which was then collected back.
The function started with a prayer song by Dr. Vishalakshi. Dr. B.R. Lakshmi, then addressed the children and the parents emphasizing the importance of Duchenne Awareness day and then introduced the guests. Balloons with the prayer notes were then flown to sky by Mr. Raja Krishnamoorthy and Miss. Sree Priya. The children were then entertained with Juggling by Mr. Magic Maha. An artist resembling the actor Vadivelu then entertained the children which the kids thoroughly enjoyed. Then the children were taken to the back stage to get ready with their new T-shirts for the car race. Meanwhile, Ms. Priya talked to the parents about the children’s need and what they expect. She pointed out that the children never expect any sympathy from them and that they would actually want to lead a normal life.
The little heroes were then dressed up smart and were marched towards the ramp. The car race was flagged off by Mr. Raja Krishnamoorthy who then enthusiastically cheered up the kids. A small game was organized for the mothers after which they were provided with snacks. Mr. Magic Maha then entertained the kids with a toy dance and a magic show. Beautifully sculpted balloons were then given to each child and a portrait of children was also made by the artists. Dr. B.R. Lakshmi introduced the team to the parents and the guests and later, medals, trophies and prizes were distributed for the winners. Return gifts were then issued for the children while returning back to home.
2nd INTERNATIONAL DAY OF YOGA – June 2016
This year we celebrated International day of Yoga on 21st June 2016. The venue was Kurinji Hospital lobby. We had invited the corporation commissioner of Coimbatore, Mr. Vijay karthikeyan as the Chief guest. Dr. K.C Ramaswami, The Chairman of Kurinji Hospital felicitated the gathering. Mrs. J. Mohanasundari, the Managing Director of Sharp industries made her gracious presence for the occasion. Mr. V. Rajagopalan , yoga master of our MDCRC enlightened the gathering on Yoga.
The occasion started by 10 a.m with the prayer song by Mr. Raghav. The Prayer song was preceded by the Lamp lighting ceremony.
The Director and Managing trustee of MDCRC, Dr.B.R.Lakshmi gave a warm welcome to the gathering and spoke about the importance of Yoga in the context of Duchenne. She said that Last year, MDCRC made a beginning to yoga by celebrating 1st International yoga day. This year it has evolved to plan a yoga curriculum for the children. She emphasized on the benefits of yoga in our DMD children and their mothers after the regular daily practice of yoga. She also added the feedback by the MDCRC staff on the wonderful benefits of yoga. She said “We, at our new model rehab centre for DMD apart from regular physiotherapy, also integrate ‘Yoga’ with the rehab management. It is mainly that yoga and its benefits are holistic and it addresses the respiratory health in an extra ordinary way. Pranayama, Kapalapathi and Bhastrika are very helpful to maintain good lung function.”
Also she said “We believe yoga will contribute towards good breathing practices and help in improvement of basic gait and respiratory function. We have specially planned exercises and yoga sessions for parents and children to enable them to cope better.”
Then our Yoga master Mr.Rajagopalan gave an introduction on benefits of Yoga. After that Master. Yashwanth demonstrated Soorya namaskaaram followed by the mothers who did some yoga asanas. Following this, our staff members of MDCRC demonstrated yoga to the gathering. Then our chief guest Mr. Vijay karthikeyan, Mrs. Mohanasundari and Dr. K.C. Ramaswami addressed the gathering. Dr. Shalini, our team member gave the vote of Thanks followed by national anthem.
CMC MEDICAL EXHIBITION – June 2016
The exhibition commenced on 10th of June, 2016 and lasted till 25th of June, 2016 including all Saturdays and Sundays. DMD Posters and pamphlets were distributed for the stall visitors. There were several schools who had visited and the posters were given to their respective staff in-charge to be displayed in their school bulletin board.
The inaugural function was held on Friday, the 24th June 2016 and was presided over by the Health minister, Dr. Vijaya Bhaskar along with the Collector of Coimbatore and other government officials. The rejoinder from the public was overwhelming. We were able to identify and get contact details of few children with DMD. The college students in general, were very much geared up to serve as a volunteer.