Hi all,

So, here’s another chapter in my career journey, a story that unfolded unexpectedly, filled with moments of learning, growth, and a sprinkle of fear!

It all began with Pediatric Hematology Oncology Support Services Conference (PHOSSCON) 2023, where I first networked with amazing people in the field of pediatric hematology and oncology (https://writingsof.prathipa.in/p/phosscon-2023-a-transformative-experience/). That conference was a turning point. Fast forward to this year: moving to Delhi wasn’t on my radar, let alone attending a conference in Jammu! But when PHOSSCON 2024 came around, I knew I had to be part of it. The agenda alone had me excited, discussions on Bone Marrow Transplants (BMT), and participation from NGOs focused on thalassemia and sickle cell disease. Just wow!

Having Shobha ji present was an absolute privilege. With over four decades of advocacy for thalassemia, she exemplified passion and commitment. Her simplicity and humility shone as she actively engaged throughout the session. Her dedication is something I aspire to emulate in my own work to advocate with purpose and unwavering energy.

Though I was excited about the conference, there were a few hiccups along the way, particularly while booking for travel etc, which added some discomfort. Also, considering I can barely handle Chennai’s mild winter, you can imagine how the cold in Delhi and Jammu felt for me! There were moments when I felt sick to my stomach, with a pounding head and all, but in the end, it was absolutely worth it. The universe showed me kindness through the people I met there, as I briefly mentioned in a previous post. From a kind stranger who turned out to be an oncologist and is now a friend, to reuniting with someone special, and finally ending the trip with a heartwarming exchange in Tamil (though I still reflexively replied, “Haan ji” instead of Tamil, lol!), it was quite the journey, both personally and professionally.

A special mention and a heartfelt thank you to Mr Sandip Jariwala, Dr Neelima, Dr Aalapti, Ms Chanchal, Mr. Chinchith Krishnan, Mr Varun Sharma, and Mr Mukesh for their kindness and support during the conference days!

I’ve always embraced my role as the one working behind the scenes, and reading Quiet by Susan Cain has made me appreciate and take pride in my introversion. It’s taught me to value the strength that comes from working quietly yet diligently. Time and again, my hard work behind the curtains has paid off, often when I least expected it, just as it did during this conference. So yeah, it was a journey of challenges, growth, and subtle recognitions!

Here’s a quick rundown of what the two-day conference brought to the table:

The conference, for me, was wholesome, a perfect blend of learning and personal satisfaction. Seeing critical topics like BMT, thalassemia, sickle cell disease, financial protection, and palliative care take center stage reminded me why I’m so passionate about this field. Among the many inspiring figures and sessions, Shobha Tuli ji, the ALSAC team, and CA Dr. Subhajit Sahoo stood out as incredible sources of knowledge and inspiration.

Shobha Tuli ji: A visionary for Thalassemia advocacy

Representing Thalassemics India, Shobha ji’s expertise was evident as she discussed challenges and proposed solutions for Bone Marrow Transplants (BMT) under the Thalassemia Bal Sewa Yojana (TBSY).
Her advocacy for expanding Ayushman Bharat coverage in TBSY reflected a vision for equitable and accessible care across India.
Her passion for the cause reinforced my belief in the power of sustained advocacy. She exemplifies the dedication needed to create systemic change, inspiring me to pursue my goals with the same intensity and purpose.

ALSAC Team: Masters of fundraising innovation

Speakers Sri Kankarla, Priya Tummalapalli, and Paola Cassana from ALSAC shared their unique fundraising approaches that support St. Jude Children’s Research Hospital, sustaining 87% of its budget.
The session highlighted strategies like data-driven campaigns, grassroots events, and digital fundraising, alongside their success in supporting international projects like the Lifeline Foundation in Ghana.
The ALSAC team showcased the importance of balancing innovation with grassroots efforts. Their success encouraged me to explore creative ways to build partnerships and ensure sustainability for future healthcare initiatives.

CA Dr Subhajit Sahoo: Demystifying CSR and financial compliance

Dr Sahoo’s session on CSR compliance, 12A & 80G registrations, and FCRA guidelines was highly engaging, drawing the attention of nearly every NGO present.
He emphasized the importance of proper registrations for tax exemptions, transparent documentation, and diversifying fundraising efforts to ensure long-term financial stability.
This session piqued my curiosity and inspired me to delve deeper into the technical aspects of NGO compliance. Understanding these intricacies will be vital as I work toward establishing my long-term vision of creating impactful healthcare initiatives.

Few other session highlights from Day 1 & 2:

My Learnings from PHOSSCON 2024: Advocacy, Growth, and Proud Moments

Day 1: Building bridges in patient-centric care Session 1: NGO presentations on Hematology and Oncology

Featured impactful presentations from organizations like St. Jude Child Care Center, Sickle Cell Saksham Rajasthan Foundation, Hope Child Cancer Care Foundation, DigiSwasthya, ICS Ulagam, Umeedein, Aarambh Palliative Care, KASH Foundation, etc,.
Discussions centered on improving care for sickle cell disease, thalassemia, and pediatric cancer through innovative initiatives.
The passion displayed by these NGOs underscored the importance of collaborative efforts in creating sustainable care models.

Session 2: Gaps and Challenges in patient-centric care

Tackled issues like late diagnosis, inadequate access to care, and stigma in conditions like sickle cell disease, thalassemia, and childhood cancer.
Actionable solutions included expanding psychosocial support and improving treatment accessibility in rural areas.
This session inspired me to think about how holistic care models could be standardized across different healthcare settings.

Day 2: A path toward holistic care and survivorship

Session 7: Supportive Care Services

Covered essential aspects like nutrition, psychological support, and infection control in pediatric oncology.
Stressed on the role of family-based counseling and standardized guidelines.
Strengthening family support systems alongside medical care resonated with my interest in palliative care.

Session 8: Financial protection for families

Addressed the financial hardships families face due to treatment costs and suggested strategies like universal health coverage and employment support for caregivers.
Financial security is vital for holistic patient care, and this session shed light on potential solutions to address indirect treatment costs.

Session 9: Status of Bone Marrow Transplants in India

Focused on accessibility barriers and funding challenges in BMT procedures.
The session emphasized the need for awareness and financial aid for life-saving treatments, reinforcing the importance of advocacy in healthcare.
In this session, we also had Ms. Sumati Mishra, a representative from Datri Stem Cell Registry, which whom we discussed donor availability for Bone Marrow Transplants (BMT). The discussion emphasized the need for increasing donor registrations and expanding the donor pool. As we aim to create awareness outside, it’s important to reflect on our own actions. PHOSSCON for the first time saw 100 registered attendees from 39 organizations, but have we ourselves registered as donors, if eligible? Why not take this opportunity to create awareness among our employees and conduct a donor registration drive within our organizations? By doing so, we can make a real impact on the availability of life-saving donors and contribute to a cause that could save countless lives. Let’s start the change within. What do you think as an organization? If you’ve attended PHOSSCON and believe it’s possible to organize a donor drive within your organization, let me know your thoughts.

Session 11: Indian Childhood Cancer Initiative (ICCI)

Presented updates on task forces working on psychosocial care, survivorship, and access to care.
Highlighted the need for survivorship clinics and national guidelines for long-term care.
A call to action for integrated survivorship care and follow-up guidelines aligns closely with my vision for improving continuity of care.

Session 12: Continuity of care - Survivorship and Palliative Care

Focused on long-term challenges faced by childhood cancer survivors, including medical, psychological, and social reintegration.
Stressed the importance of integrating palliative care from diagnosis to survivorship.
This session reaffirmed my belief that palliative care is essential for ensuring dignity and quality of life, a cause I hold close to my heart.

Proud Moment for CanKids KidsCan

A defining moment was the recognition of Ms Poonam Bagai, Chairman of CanKids KidsCan, with the Lifetime Achievement Award at PHOCON 2024. Her unwavering dedication to children with cancer continues to inspire us all.

Few Takeaways

Advocacy is crucial: Leaders like Shobha ji and Poonam ma’am remind me of the power of persistence and dedication in making systemic changes.
Collaboration matters: Learning from ALSAC’s fundraising strategies and engaging with NGOs during compliance sessions reinforced the importance of working together.
The Role of Compliance: Dr. Sahoo’s session was a reminder that strong foundations are essential for long-term success in the non-profit world.
Holistic care is the future: The emphasis on survivorship and palliative care aligns with my own aspirations in healthcare advocacy and psychosocial support.

PHOSSCON has yet again given me networking opportunity, left me inspired, motivated, and ready to take the next steps in my journey toward meaningful change in healthcare - in the field of Palliative care.

Here’s to more growth, advocacy, and opportunities to make an impact. Jammu, you were cold, but you warmed my heart with this experience!

(And yes, as much as I’m a passionate Public health advocate, the ‘punny’ writer in me just couldn’t resist—sorry, not sorry! Haha.)

Until next time, PHOSSCON!