Josh Mailman has been described in the neuroendocrine tumor (NET) community as being "everywhere for NET." He uses his vast knowledge of NET disease, along with his technical skills, to touch the lives of a wide range of NET patients and caregivers. His unwavering loyalty and commitment to the NET community is illustrated by the many roles he plays.
Josh didn't "fill out a job application," as he playfully jokes, to become a NET patient advocate. Over 8 years ago, when he was diagnosed with a metastatic NET of the pancreas, he embarked on his own exploration for information related to his disease, which he shares online. "I wanted to make sure that the experiences I've had and the information that I learned were shared so that others didn't have to recreate it on their own," he explains.
Since the beginning of his advocacy journey, Josh has shared his experience with integrative oncology (evidence-informed complimentary therapy). For 4 years, Josh served on the Executive Board of the Society for Integrative Oncology (SIO). He currently co-chairs the SIO Patient Engagement Taskforce. Additionally, in 2015 Josh was reelected to the National Institute of Health Taskforce on NET.
From January 2013 through June 2015, Josh was chair of the Society of Nuclear Medicine and Molecular Imaging (SNMMI) Patient Advocacy Advisory Board. He is still a member of their gallium-68 taskforce and the Targeted Therapy Working Group. In June 2015, Josh received the SNMMI Presidential Distinguished Service Award for his contributions.
Helping others through their journey with NET is something that Josh finds invaluable. He regularly takes time out of his busy schedule to speak to patients, advocacy groups, and medical societies. Josh will even accompany patients to medical appointments to help them better understand their treatment options.
In addition to speaking at medical conferences around the world on the patient experience and writing about it ("Living With a Rare Cancer, My Dr. Seuss World", ASCO Post May 25, 2015). Josh has used his technical skills to assist with redesigning websites and maintaining information systems for both the North American Neuroendocrine Tumor Society (NANETS) and the World Association of Radiopharmaceutical and Molecular Therapy (WARMTH).
As the president of the Northern California (NorCal) CarciNET Community, Josh helps host content-rich NET support group meetings that feature patient educational speakers every other month. "Our community meetings provide both educational and much needed support for patients and caregivers," Josh noted. NorCal CarciNet Community co-hosts an annual regional conference in conjunction with the University of California, San Francisco, Stanford, and the Caring for Carcinoid Foundation.
Josh believes there are "unexpected joys around every corner." "That is what keeps me going--knowing that I am making a difference to patients, caregivers, and to the medical community," he says, "as long as I am accomplishing something meaningful, I won't slow down."
For all that he does, Josh was selected as the 2015 Monica Warner Award recipient. He is an engaging and trusted resource, a thought leader, an invigorating speaker, and a proactive advocate for NET awareness. Josh truly is "everywhere for NET."
Novartis Oncology and Patient Advocacy provide support to patients through an array of programs and services.
The NET Alliance is a Novartis Oncology initiative working to help improve outcomes for patients with NET.