Why We Do What We Do – A Patient Driven Mentality

Oct 12, 2017

Patients are at the heart of everything we do – both for MassBio and the member companies we serve. We’re all driven by the urgency to find treatments and cures to save patients’ lives. We’re all #PATIENTDRIVEN®. 
Now in its 4th year, the MassBio Patient Advocacy Summit convenes hundreds of industry professionals and serves as a day dedicated to reminding all of us why we’re in this industry. We asked those that have been instrumental in planning this event, “Why do you do what you do?” Here’s what they told us: 
“Why do I do what I do? I do this work because my brother-in-law Paul founded TargetCancer Foundation after his own diagnosis with a rare cancer called cholangiocarcinoma. Like many rare cancers, cholangiocarcinoma received little research attention, and as a result, had no effective treatments. Paul took action by creating TargetCancer Foundation in an effort to identify and fund innovative and impactful research into rare cancers like the one he was facing. After his death, his family continued the work that he started, and eight years later we remain dedicated to his original mission by funding rare cancer research while supporting those facing rare cancers today.”
Jim Palma, Executive Director of TargetCancer Foundation & Speaker at MassBio’s Patient Advocacy Summit 
“Nothing prepares you for the emotions you experience when a loved one receives the diagnosis of a debilitating illness for which there is no cure. My wife was diagnosed with early-onset Parkinson’s disease over 10 years ago, and the emotions we felt are as distinct today as they were then, and thrust us into the unexpected roles of patient and caregiver. Caregiving is a humbling experience, and to meet the needs of others, all caregivers must learn some important life lessons. It’s all unchartered territory and mostly “seat-of-the-pants learning” for the caregiver, who must learn and do at the same time. Much of the learning comes from failure and taking your lumps along the way; and listening to the wisdom of other caregivers. I am not a scientist, but through my work in the life science industry, am in frequent contact with patients and with the important people who are part of their caregiving team. It’s through this interaction that I have become a better caregiver for my wife and able to offer the support she needs.”
Paul Kidwell, PR Consultant & Member of MassBio Patient Advocacy Summit Steering Committee

“My work brings me closest to what I care about most—people. Building meaningful, genuine relationships with individuals, families and communities affected by mental health and substance use disorder is the most personally rewarding aspect of my work in patient engagement. I am inspired by advocates who raise awareness, provide their perspectives and experiences, foster healthcare innovation and promote wellness in the community. I am driven to do what I do because I want to support every person’s right and access to physical and mental wellness and the pursuit of their dreams.”

– Larissa Marie Khouw, Associate Director of Patient Engagement at Alkermes & Member of MassBio Patient Advocacy Summit Steering Committee

“Those who suffer with disease are among the most vulnerable in our society. For patients and families, including my own family and friends suffering from brain tumors, psoriatic arthritis, Alzheimer's, and rare disease, innovation is hope. The status quo is simply just not sufficient and so I fight the battle for them.”
– Robert Schultz, CEO and Founder of Tunza Corporation & Member of MassBio Patient Advocacy Summit Steering Committee
“When I joined the pharmaceutical industry it truly was to have the opportunity to work in the healthcare system and help patients. As my career has grown, I have been so privileged to focus on patient advocacy, and most recently, with rare disease communities. It is hard to express the impact patients, families, advocacy groups and KOLs have had on me. Always pushing us to do the right thing for the right reason, the only reason: better patient care. Whether it is influencing clinical trial development to accelerate meaningful therapies, creating unique company sponsored programs to meet the needs of a community at large, or 1:1 patient meetings, each opportunity is a chance to positively impact lives. As a transformative concept, patient-centricity has been building steam in the  pharmaceutical industry for years and is now firmly implanted. We get to give patients the freedom to live their lives the way they choose. WOW.”

Wendy Erler, VP Patient Advocacy at Wave Life Sciences & Member of MassBio Patient Advocacy Summit Steering Committee

Register today for MassBio’s Patient Advocacy Summit on October 27th: https://www.massbio.org/events/patient-advocacy-summit-2240 

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