The 5th FOM Leadership Summit 2021: Unmasking CML & GIST – Life Beyond the Pandemic was the first FOM leadership summit which was organized virtually, on the 20th and 21st of February 2021. Every alternate year FOM organizes a Leadership summit for core group volunteers to update everyone about FOM’s plan , contributions and latest development in the field of CML and GIST care and medications.
Day 1 of the meeting began with the hosts Aashray Paul of Friends of Max and Sudha Samineni of The Max Foundation, welcoming all the members of the audience. The meeting was started by Nirmesh Prakash & Pramod George – two pillars & Trustees of FOM with their trademark “Bhai and Bhidu Show”. They explained about the entire program in their unique Mumbaiya style. They also emphasised about the need to follow protocol so as to stay safe from COVID19 & also motivated us by saying ,”When the Big C (Cancer) can’t do anything to us, then the Small C (Corona) is nothing to lose sleep over.”
After that, FOM Trustee & Treasurer Sunder Krishnan presented the annual report of FOM. He informed that the money collected on account of membership fee etc. and how it was spent for support of poor patients.
The stage was then set for our two City chapter leaders Dr Jude Vaz and Dr Raghu Krishnaswamy. They brilliantly moderated the excellent medical session. In this session, eminent physicians like Dr Mammen Chandy, Dr Hari Menon, Dr Pankaj Malhotra & Dr Ganapathy Ramanan delivered presentations on topics like Second Generation TKIs, Side effects of second generation TKIs, Generic TKIs & their efficiency & new drugs for CML & GIST patients. The session was excellent and every doctor explained their topics in detail so that our City Chapter Leaders could derive maximum value out of them.
Next, it was time for most awaited Question and Answer session which every FOM member awaited eagerly. The Q&A session was followed by the Panel Discussion on “Living with CML /GIST during the times of COVID and after”. The discussion was moderated by Dr Shyam Aggarwal, and the panel comprised of Dr Hari Menon, Dr Hemant Malhotra, Dr Raghunadha Rao and Amma.
This session went on for a while because the audience asked their queries to doctors and they answered every single one of them. In this session most of the questions were related to COVID & it’s vaccines – weather the administration of the vaccine is safe or not, which vaccine is better and other side effects, interactions with TKIs etc. There was active interaction with all the patients and caregivers carefully listening in.
After that highly informative evening, it was time for our Rockstar Pranay Ranjan, a Core Group Leader from Bengaluru who lifted our spirits with a power-packed performance to begin the evening entertainment segment, “Gaata Rahe Mera Dil”. We also had performances from our Trustee Sunder Krishnan, patients & very talented artists like Venky, Tanvi, Tusharkanti, Avinash and of course our own Amma.
And just like that with music, magic and nostalgia, we concluded Day 1 of our Summit – balanced equally with the perfect blend of information and entertainment.
You can watch the recording of Day of FOM Leadership Summit 2021 by clicking on the YouTube link below-
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Day 2 began with Anil Nagpal & Shyam Kankani doing a quick but comprehensive recap of Day 1 Leadership Summit making sure not to miss out anything important yet making it interesting with anecdotes and even some poetry.
The first session this day was “Beyond Borders – Sharing and Learning from our International Brethren”. The session was chaired by FOM Trustees S. Parameshwaran and Viji Venkatesh. Amma had always dreamt of bringing our international brethren to participate in our FOM leadership Summits could finally do so even if it was at an online meeting. She talked about how COVID taught us how to harness technology despite being locked in and despite physical distance. Param introduced each international speaker and spoke about his own association with them at various forums.
First to share his experiences was Giora Sharf, who connected with us from Israel. and he spoke on – Bringing MPN into the Fold. Giora advocated Living life to fullest. On TFR for a few years now, Giora founded the MPN ( Myelo Prolifertive Neoplasm – CML falls under this category) support group in Israel which mirrors the work being done by FOM. Next, Rod Pdua, the Founder of Touched by Max in The Philippines spoke about how his organization conducts various events like Art works, exhibitions, blood donation camps, patient outreach programmes, etc. for all kinds of patients for multiple diseases. The next presenter was Dr Abd Razak, founder of Max Family in Malaysia. He shared the best practices in establishing and sustaining the success of Patient Support Groups. Talking on Issues faced by fledgling support groups was Shofiur Rahaman Sohag, from Bangladesh CML Supporting Group, who enlightened us about “Issues faced by fledgling support groups”. Next in line to speak on Latest updates in Disease Management from the Global CML Community was Jan Geissler, from the CML Advocates Network, who connected from Germany. Jan said that he thought that CML was like a tiger in a cage. CML is a cancer that with proper testing and diagnosis and treatment can be treated and controlled with options including many generations of TKI, Interferon, stem cell transplant etc. but it is like a tiger in cage that can kill if let loose.
After the highly informative international segment, Dr Jude Vaz and Dr Raghu Krishnaswamy took up the stage once again to commence the Medical Session. They expertly moderated the session as Dr Raghunadharao, Dr Manju Sengar, Dr Hemant Malhotra, Dr M B Agarwal, Dr Bhawna Sirohi and Dr Suresh Advani delivered precise presentations on “Latest updates on management of GIST”, “Monitoring Guidelines”, “TFR and its feasibility in the region”, “Is BMT the only solution when all else fails”, “Access Programmes – Challenges & Advantages” and “Management of long-term side-effects of Imatinib” respectively.
This was followed by the much awaited Q&A session, where attendees sent their queries, and the physicians very patiently answered each and every one of them.
After the Q&A session ended, it was time for a Panel Discussion on “Role of Non-Profits & Support Groups in line of treatment”, Moderated by Dr Senthil Rajappa. The panel comprised of Dr Pankaj Malhotra Dr Dinesh Bhurani, Dr Bhawna Sirohi. Dr Senthil began the discussion by asking all doctors on the panel to respond to the importance of support groups of Max Foundation and Friends of Max. All the doctors agreed that both Max Foundation and FOM were like family now and it was difficult to imagine CML care without the support of both. Dr Senthil also invited Amma to join the conversation, who informed the panel and the audience how Support Groups are the bridge between physician and patient. The Max Foundation helps patients in living longer. It has helped forge a stronger bond between patient and doctor. We are now partnering with other organisations to go beyond CML and GIST. All doctors have shown that all treating physicians have supported patients in whichever way they can.
It was finally time to hand over the proceedings to Pat Garcia-Gonzalez, who spoke on the topic “The Max Foundation & its Partner Patient Support Groups – Two decades of service”. She began with a powerful statement – “Where you live should not depend on if you live.” She outlined the vision of The Max Foundation “A world where all people facing cancer live with dignity and hope”, and how that vision was being implemented. She said that The Max Foundation and FOM are two separate entities, but have few common mission and purpose . She also talked about the evolution of the partnership between the two.
After Pat’s beautiful presentation, FOM Trustees Prof. Subratanath Koner and Sujeesh Sukumaran delivered a hearty closing address which left everyone in smiles as we came to an end of the two day long grand event.
You can watch the recording of Day 2 of the Leadership Summit by using the YouTube link below-
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This report was made possible thanks to the efforts of our City Chapter Leaders J.P. Tiwari and Sandhya Godey.
J.P. Tiwari Sandhya Godey
