Empowering Pancreatic Cancer Patients: The Impact of Global Advocacy Initiatives
When faced with a pancreatic cancer diagnosis, an individual naturally desires a heightened focus on two critical aspects: raising awareness about this aggressive disease and pushing for advancements in early detection and treatment options. Unfortunately, while the overall mortality rates for many cancers are experiencing a decline, pancreatic cancer remains an alarming exception, with both occurrence and death rates on the rise. This dire situation has sparked a collaborative spirit among several passionate advocacy groups worldwide, all aiming to bring hope and support to patients and their families.
A United Front Against Pancreatic Cancer
Finding a community can be crucial in navigating the challenges of pancreatic cancer. Three remarkable organizations are uniting their efforts to enhance the quality of life for individuals facing this disease. Not surprisingly, they are all proud members of the World Pancreatic Cancer Coalition.
PurpleOurWorld: Spreading Awareness
The #PurpleOurWorld initiative emerged following the heartbreaking loss of Rochelle Goulburn, who bravely fought pancreatic cancer for 16 months before passing away in 2014. Her family joined forces to launch this movement just two months after her death, with the primary aim of igniting conversations about pancreatic cancer.
Jessica Abelsohn, Rochelle’s daughter, expressed, “From the moment of my mother’s diagnosis, we found a significant lack of support and awareness surrounding pancreatic cancer. We wanted to ensure that others facing similar challenges wouldn’t feel isolated and unsupported.”
The campaign’s first year focused on encouraging people to wear purple and share photos on social media using the hashtag #PurpleOurWorld. The initiative gained momentum, and in 2015, they enlisted prominent ambassadors, including journalist Tracey Spicer and rugby legend Robbie Farah, both of whom are passionate advocates due to personal losses to the disease. They also collaborated with other charities to form the Australian Pancreatic Cancer Alliance.
“Collaborating with organizations globally is crucial for making real progress,” Abelsohn remarked. Through these partnerships, #PurpleOurWorld is dedicated to raising awareness, lobbying for government support, and funding pancreatic cancer research. Their efforts have transformed the campaign into a powerful voice for those affected by the disease, honoring those who have suffered or succumbed to pancreatic cancer.
Abelsohn noted, “The survival rate for pancreatic cancer has doubled in Australia since my mother’s diagnosis in 2013, increasing from 5.8% to 12%. My hope is to see survival rates dramatically improve, flipping the narrative so that we have an 88% survival rate instead of an 88% mortality rate.”
Fondazione Nadia Valsecchi: A Legacy of Hope
Federica Valsecchi was a medical researcher in the U.S. when her mother, Nadia, was diagnosed with pancreatic cancer in Italy. Tragically, by the time of diagnosis, the disease had advanced to her liver, and Nadia passed away at the young age of 58. In 2015, driven by her loss, Federica founded the Fondazione Nadia Valsecchi to honor her mother and increase awareness of pancreatic cancer in Italy.
“After losing her within six months, I was determined to bring pancreatic cancer into public discourse,” Valsecchi shared. She utilized her research background to connect with leading experts and mobilize support, establishing the foundation as a key voice for pancreatic cancer in Italy.
Valsecchi noted, “The complexity of pancreatic cancer makes it unique.” The foundation actively lobbies for improved access to medical care for patients while offering valuable resources, such as bi-monthly webinars that allow patients to engage directly with healthcare professionals from the comfort of their homes.
Currently, Valsecchi works on CAR-T cell therapies at Memorial Sloan Kettering Cancer Center. While this innovative treatment has shown promise for patients with liquid tumors, she dreams of similar breakthroughs for pancreatic cancer patients. “I envision a future where we achieve comparable success rates,” Valsecchi expressed.
The John E. Sabga Foundation for Pancreatic Cancer: A Mission of Education and Support
In April 2016, John E. Sabga received his pancreatic cancer diagnosis and embarked on a journey across the U.S., seeking the best possible treatments. Unfortunately, despite his relentless efforts, he lost his battle with the disease ten months later, passing away at 56.
His wife, Natalie Sabga, recalled, “His cancer was like a raging fire—just when you thought it was out, it flared up again.” After John’s passing in January 2017, Natalie established the John E. Sabga Foundation for Pancreatic Cancer (J.E.S. Foundation) later that year. Within just four months, the foundation raised $250,000, and by the end of 2018, that number grew to $650,000, with a goal of reaching $1 million. The foundation aims to expedite the search for early detection methods, fund vital clinical trials, and ultimately discover a cure.
The J.E.S. Foundation also focuses on providing essential education and support to those battling pancreatic cancer in Trinidad and Tobago, with plans to launch a clinical trial there. Although the COVID-19 pandemic has delayed these efforts, Natalie and her team remain committed to supporting patients and their families with palliative care and other services. “In this way, I’m still striving to save John,” she affirmed.
By supporting these organizations, individuals can contribute to the fight against pancreatic cancer, helping to raise awareness, fund research, and ultimately save lives.
