Digital Advisory Board Archives

Melissa Adams VanHouten

Melissa Adams VanHouten is a former university political science instructor and corporate trainer who holds a B.S. in Political Science from St. Joseph’s College and an M.A. in Political Science from Indiana State University. After being diagnosed with gastroparesis in February of 2014, she became a passionate advocate for those in her community who feel voiceless and ignored.

Currently, as the Association of Gastrointestinal Motility Disorders (AGMD) Patient Education and Advocacy Specialist, International Foundation for Gastrointestinal Disorders (IFFGD) Patient Advisory Committee member, co-author of the book, “Real Life Diaries: Living with Gastroparesis,” and creator and administrator of several online patient support and advocacy groups, she spends her days advancing the cause of those who struggle with the sometimes devastating and life-altering effects of gastroparesis and other chronic illnesses. It is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, cures.

Cynthia Chmielewski

Cynthia attended Rutgers University graduating with degrees in Psychology and Education.  Upon graduation she secured her first teaching position and immediately fell in love with her chosen profession. Cynthia continued teaching for 28 years.

Now retired, Cynthia, a myeloma survivor, is using her passion for education to teach a new group of “students” – myeloma patients and their caregivers. She is on the advisory boards of the Patient Empowerment Network, the Myeloma Crowd Research Initiative and the Philadelphia Multiple Myeloma Networking Group. Using social media to educate is her passion. Cynthia educates and advocates by tweeting at @MyelomaTeacher and sharing myeloma resources, educational opportunities and clinical trial information on her MyelomaTeacher Facebook page. Ms. Chmielewski is the co-founder of the #MMSM TweetChat and is also a regular panelist on the CureTalks Podcast. Cynthia was an invited panelist and presented posters on using social media in hematology at the annual meetings of  the American Society of Hematology (ASH), the American Association for Cancer Research (AACR) and the European Bone Marrow Transplant (EBMT).

More recently Cynthia joined the Patient Engagement team at Patient Power. Additionally, she consults on educational projects sponsored by the Myeloma Crowd.  She enjoys serving as a voting member on the IRB at the University of Pennsylvania, the patient advocate on the Myeloma Steering Committee of the ACCRU clinical trial network and a peer reviewer for the National Cancer Institute (NCI).

Marie Ennis-O’Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

Christian Gardner

Christian has been working in digital platform build and online communications roles for the past 10 years, across a range of industries and companies, but with a major focus on healthcare. His life and work has given him a truly global perspective – starting working life in London and delivering projects throughout Europe, the US and the Middle East and now in New Zealand having worked with a range of companies in Australia.
In the early part of his career Christian worked as part of a global Research and Development communications team at AstraZeneca and quickly realized the challenges, but more importantly rewards of being able to communicate complex science digitally. Since then he’s worked for both content and creative agencies to help a range of healthcare organizations tell their stories – whether it’s to scientists, the media or people living with diseases.
Christian – now based in New Zealand – is currently working at a digital agency in Auckland called Heyday. The agency services a whole host of industries beyond just healthcare, which has been a great reminder of exactly what’s possible digitally, without some of the regulatory and compliance hurdles healthcare can throw at us! This step outside of working solely in the healthcare industry has given Christian a fresh perspective on digital best practice and hopes to bring some of that thinking back into the healthcare industry in future.

Christina Lizaso

Christina Lizaso, known on Twitter as @btrfly12, is a community engagement professional who utilizes her background in nonprofit and volunteer management to empower patients and strengthen the patient voice. Her passion for this is driven by her own strong family history of cancer. Christina is co-founder and co-moderator of the #gyncsm community for gynecologic cancer. Christina is also a digital ambassador for the National Society of Genetic Counselors, helping raise awareness about the important role of genetic counselors. Christina serves on the Patient Advisory Board for Clara Health, a clinical trials company striving to be the simplest, fastest, most patient-friendly way to connect patients to the newest treatment options. Christina’s professional services include tailoring health information for specific audiences on Twitter, Facebook and other digital media and bringing people together around carefully framed topics to foster enlightening discussion.

Casey Quinlan

Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her standup comedy set. When she got a cancer diagnosis five days before Christmas, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. She writes, she speaks, she facilitates the Festivus Airing of Grievances in healthcare. Her favorite people to work with are those who want to fix the system, not serve the status quo.

Social profiles: Twitter LinkedIn, and Medium

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.