FOM Kolkata Report
Friends of Max (FOM), Kolkata Chapter arranged a regional meeting at Eastern Zonal Cultural Center (EZCC) Auditorium at Salt Lake, Kolkata on 4.8.2012.
Mrs. Viji Venkatesh, Country Head, Max Foundation had come all the way from Mumbai and spared her invaluable time in not only helping the Kolkata Chapter organize the event but provided valuable guidance and support to organize the event..
After weeks and weeks of FOM core members meetings, ideas, updates and planning etc. some of the members of the core group of FOM Kolkata met on August 03, 2012 (Friday evening) at Amma’s room at the International Club, Theater Road for a final run down of the meeting. Every one set out to do their individual tasks allocated to achieve the main objective of having a momentous meeting. The experiences and shortcomings of the previous meetings were deliberated upon and suitable remedial measures thought about to make good the minor glitches that were encountered.
On the dawn of the D Day, the core group members started assembling at the venue from 8 AM. The enthusiastic CML & GIST patients and care givers from the state of West Bengal and some of the neighbring North Eastern States started arriving to the venue as early as 8.30 AM. Prof Subrata Konar was in charge of registration process and he was proficiently assisted by some of his students from the University. Some of the FOM, Kolkata volunteers like Anshu Agarwal and Stuti Koner also supplemented their efforts. The standard practice of differentiating the patients, care givers, doctors and the core group volunteers was followed by having different colour registration cards for each category of people.
The occasion was graced by some of our endearing Doctors of the Eastern Region notably
1. Dr Mamen Chandy, Director, Tata Medical Center,Kolkata
2. Dr. R. N. Ghosh – Head of Department – Haemato-Oncology – Thakurpukur Cancer Centre Welfare Home & Research Institute, Kolkata
3. Dr. Ashish Mukherjee – Director, Netaji Subhash Chandra Bose Institute
4. Dr Chaudhuri , Kolkata Medical College and Hospital
5. Dr Chakrabarti, Kolkata Medical College and Hospital
The Meeting started with the National Anthem. Soon afterwards the comperes called upon Viji Venkatesh, Country Head, India of The Max Foundation warm-heartedly called ‘Amma’ was called upon to set the tone for the meeting. Amma gave a very warm welcome to all the patients and care givers who had come for the meeting. She lucidly retraced the audience through memory lane and gave a brief account of the advent of Max Foundation and the journey traversed of just over a decade.
She spoke about the spirit and life Max Rivarola who was diagnosed with chronic myeloid leukemia (CML) at age 14 at a time when treatment options were despondently inadequate. At the age of 14, Max was diagnosed with chronic myeloid leukemia (CML). His parents were told that his only chance for a cure was a bone marrow transplant. Unfortunately, Max was an only child and neither one of his parents were a match for him.
Max Rivarola laid down his struggle against CML on March 9, 1991 at the age of 17. He fought this most difficult battle with outstanding courage and strength and an exemplary display of mettle and fortitude which became an inspiration and steered to the birth of The Max Foundation.
Established in 1997, The Max Foundation is dedicated to improving the lives of people with blood cancer and rare cancers and the organization’s roots are in patient advocacy achieved through a network of advocates around the world, known as MaxStations. The Max Foundation’s mission includes supporting patients living with blood and rare cancers from all over the world. The Foundation provides advocacy and support services to over 16,000 families from more than 100 countries and help people enroll in patient access programs, identify paths for access to treatment, and advocate on their behalf, all the while caring for their emotional health.
In India, The Max Foundation came to existence on May 15, 2002 and has grown leaps and bound over the past decade. Current statistics show the Foundation to be catering to the over 15000 patients who have been beset with CML or GIST. Viji Amma recounted for the audience with the different forays undertaken by the Max Foundation during the past decade and a brief road map for the years to come.
The activities of Kolkata Chapter were also brought to focus wherein it was reflected that the Chapter had come of age and was in the process of holding the sixth regional meeting. The earlier meetings including a National Meeting that was held in 2006 had been runaway success registering over 1000 participants.
The hallmark of a FOM meeting is comprehensive. Question & Answer session with our venerated doctors. Ms Stuti Koner and Ms Anshu Agarwal in their immaculately articulate and lucid style conducted the session. The elite panel of doctors comprising of Drs Mamen Chandy, Director, Tata Medical Center,Kolkata, R. N. Ghosh – Head of Department – Haemato-Oncology – Thakurpukur Cancer Centre Welfare Home & Research Institute, Kolkata Ashish Mukherjee – Director, Netaji Subhash Chandra Bose Institute Dr Chaudhuri , Kolkata Medical College and Hospital and Dr Chakrabarti, Kolkata Medical College and Hospital answered the questions . The session began with a note that “All familiar questions and familiar answers”. Well, the pervious comment was broken into pieces, because the questions covered from diagnosis of CML from child hood to elderly. Doctors spoke in depth about the pros and cons of taking Glivec and how to overcome the side effects and day to day issues. Q&A also covered the marital and parenthood concerns. It also touched the issues faced by the GIST patients. Session touched base on all the aspects of both Men and Women, life with CML and GIST. Questions also covered the advanced medicines now available. The frequency for monitoring the ailment and the different tests in vogue were deliberated in great details. Doctors were amazingly patient in answering each and every question decisively and every concern addressed.
A Compliance presentation made by the FOM Kolkata team had many insights about the day to day issues faced by the CML & GIST patients while taking the tablets and importance of taking the tablets regularly. A study revealed that 91% percent of the patients are taking their tablets regularly while the remaining 9% are not taking Glivec on a daily basis. The numbers were positive; it would’ve been satisfying if that 91 % was 100%. It is in our hands to see that percent through to 100% soon. This session also discussed the reasons for Non-Compliance, Side effects and methods to be adhered for daily consumption of Glivec. A Survey was conducted to assess the compliance quotient of the audience.
Thereafter at about 1-30 p.m. a big size beautiful veg. lunch boxes were served to all. Hats off to each and every FOM core group member who worked tirelessly and without a break – before and during the meeting. 320 + attendance is stupendous – and i can only marvel at the meticulous planning and painstaking efforts that have gone into making of all the individual calls which resulted in such a great number of people attending.