Our Patient Advocates for the month of August 2023 are Pinakin and Niraj Munshi, the City Chapter Leader duo from Mumbai.
Love is Selfless and Happiness is a State of Mind
While Pinakin grew up in the beautiful city of Belgaum in Karnataka, Niraj’s childhood was spent in the close-knit colony of a sugar factory in Billimora, Gujarat. Pinakin remembers spending much of his growing-up years reading, gardening and playing badminton. Niraj loved taking care of little dogs and cats and recalls her childhood with lots of fun surrounded by pets.
Pinakin is an engineer by profession, while Niraj has completed her Bachelor of Science degree. Niraj also enrolled in an MSc program. However, she unfortunately could not complete it due to a brief illness. In pursuit of his professional endevours, Pinakin moved to Mumbai in 1984.
In January 2007, Pinakin was diagnosed with CML and was referred to the team at The Max Foundation and included into the access program. Attending the “Together we Train and Learn” workshops organised by Max for the patient group Friends of Max, gave him an opportunity to interact with other patients and caregivers thereby becoming a regular part of the FOM community. “The experience of coming alive as part of FOM, driven by the noble intentions of supporting and increasing awareness for CML and GIST patients, aligned perfectly with our personal goals and objectives. This journey has since been immensely fulfilling and has served as a source of inspiration and motivation for us to contribute to our CML community”, say Pinakin and Niraj.
Today, they remain very active members of the FOM family. They have volunteered for a variety of activities to further the patient group’s objectives – from calling patients to invite them to FOM meetings and events to conducting art and drama therapy workshops conducted therein. Niraj has also been an active participated in panel discussions, where she has shared her experience as a caregiver. In addition, they have been supporting the “Chai for Cancer” initiative by distributing CFC merchandise to their family and friends. This has resulted in donations to CFC and has helped spread the word about FOM and its fund-raising mission for patients from weaker sections of society.
At the recent Mumbai Patient Support Group Meeting, Pinakin actively took part in the workshop that raised awareness of the recently released “Know Your CML App”, a self-management tool for CML patients, and to show patients how to use it. We also remain grateful to him for donating his artwork to Colors of Hope, an exhibition of art created by our FOM members to help raise funds for those who need financial support. Most of his paintings were among the first to go off the display wall!
One of the most memorable experiences that the couple recall is their visit to Navjeevan village in 2009 to conduct an art therapy workshop for the children there. Navjeevan is an organization that works with young children from the red-light districts of Mumbai, grooms and educates them until graduation and helps them settle in life as also to take care of their mothers in their twilight years. The couple were highly impressed and inspired by the positivity, joy, enthusiasm and the cheerful attitude of the children. That visit taught them that love is selfless and happiness is a state of mind.
Pinakin and Niraj are an inspiration and beacon of hope to all of us in FOM, patients and caregivers alike. They live with their children- a son and daughter who also have been enthusiastic volunteers with FOM from a very young age. Niraj is also an active member of the Dog Management Committee of their residential complex, which helps her continue her childhood passion.
Their advice to CML patients is:
“We are all in this together. Together we shall fight and win this battle through love, care, education and information. Science has made great advances in cancer treatment and we are ever grateful to companies like Novartis and The Max Foundation, and their visionary leadership, for initiating patient assistance programs that have given hope to thousands of patients who would not have been able to afford and access the treatment otherwise. The Max Foundation and Friends of Max and our panel of Hematologists and Oncologists have done an amazing job of providing love, care, support, and education to patients and caregivers. They have helped ease our anxieties and given us hope and positivity. FOM has also been a powerful advocate for cancer patients”.