History is usually retrospective and shows a certain faction in an illuminating light. Through our journey from 2003 (which is when we informally started) till now, we have constantly focused on our common sense values of support, sharing, and engendering a sense of belonging within individuals who might for a brief point lose their faith in the beauty of living.
- We started in 2003 as a focus group of about 80 volunteers spread across the metro cities and worked informally for a few years. The logistical nightmare of not having a NGO status legally meant most of our work had to be low-key (due to lack of budgets). It also meant most of our funds were cash, due to the lack of a bank account. At this point The Max Foundation was reaching out to about 1200 patients.
- A set of helpful guides in various languages, which helped people understand CML/GIST in everyday terms. - An email group where all the 2000 patients and their families could connect with each other. (At that point (like even today) the email group did not have all the patients because quite a few of them lack email infrastructure. - Closer doctor-patient co-ordination especially around including the “human side” of doctors into the equation. Doctors began building some sort of a relationship with patients via FOM , which in the normal course would have not happened.
- Out of these support groups, came out
- Regional groups started focusing on local support not only around CML/GIST patients, but much beyond. Bangalore has been working with a local hospice regularly since 2005. The Mumbai team has worked closely with other cancer patients at Tata Memorial hospital. There have been teams which have worked on spreading knowledge around cancer awareness and how tobacco and gutka products contribute to it.
- In 2006, we had a patient meet at Delhi. By now the number of patients in the country had increased to over 5000.
- Having done two nationwide patients connect meetings without a bank account, we realized this was just not the most efficient way of working. It impacted our cash management. In 2007, we finally registered as a NGO “Friends Of Max”. We can now accept cash, cheque and any other forms of donation. Also we are now recognized as a NGO who work with cancer care.
- We now have more than 9000 patients. The third national meet was held in Jan 08 at Bangalore with the fourth scheduled for Kolkota next year. Our core group of active volunteers exceeds 400 with a spread across the breadth of the nation. We must remember that almost all of these 400 people are directly impacted with CML or GIST. (In some funny way, FOM is like “democracy”… by the people, for the people)