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.
- 2003 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.
- 2005By the time we entered 2005, we had volunteers mushrooming all over the place. Not being restricted to a few cities, and with patient numbers crossing 2000, we were now constrained by connectivity. It was difficult for us to make everyone feel as one, we were becoming regional subsidiaries rather than the one giant we had envisaged ourselves to be. This logically drove us to do a nationwide patient meet, and from here started our yearly desire to aggregate once in a single place every year.
- Out of these support groups, came out
- – 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 coordination 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.
- 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.
- 2006In 2006, we had a patient meet at Delhi. By now the number of patients in the country had increased to over 5000.
- 2007Having 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 an NGO “Friends Of Max”. We can now accept cash, cheque and any other forms of donation. Also, we are now recognized as an NGO who work with cancer care.
We now have more than 15000 CML & GIST patients and their families to whom we dedicate our services.
Our annual national meets after having been conducted in all major metros have now been replaced by monthly meetings in one city or the other. These meetings bring together patients, their caregivers, treating physicians and The Max Foundation— offering a safe and strong platform for sharing and learning. Our core group of active volunteers who are called City Chapter Leaders are spread across the length and breadth of the country. These committed patient advocates come together periodically for what has come to be known as Leadership Summits. These are intense residential workshops usually conducted over a weekend where our City Chapter Leaders receive knowledge and training that will equip them with the required skills and knowledge that will help them to support and be there for those patients in their regions. We must remember that almost all these leaders are directly impacted with CML or GIST. In a funny way, FOM is like “democracy”… of the people, by the people, for the people.