Board of Directors
Libby's Lungs is a State of Pennsylvania registered Nonprofit Corporation EIN 99-1870650. Our board of directors is comprised of volunteers who meet regularly to provide insights and feedback as well as assist in the decision-making process regarding fundraising events and patient support initiatives.
It is important that the patient perspective is at the forefront of all our efforts. Therefore, our board of directors is comprised of patients, a care partner, and a medical professional. Each member knew Elizabeth well and understood her beliefs and views concerning research and patient support services.
Sven de Jong
Co-founder, President
Pittsburgh, PA
Sven de Jong along with his late wife, Elizabeth, were the co-founders of Libby’s Lungs. Since Elizabeth’s original diagnosis in 2016, Sven became active in the lung cancer community with his primary focus being on two areas: advocacy for increased research funding for lung cancer and raising funds to support the research taking place at UPMC Hillman Cancer Center. Sven has worked with pharma companies to provide the care-partner perspective and met with numerous elected officials to educate them on the grim statistics facing all lung cancer patients.
Sven is a strategic branding, marketing, and communications executive. Previously, he spent 15 years as a fundraising professional.
Stephanie Kaiser
Elizabeth’s Former Oncology Nurse Practitioner, M.S.N., CRNP, AOCNP
Gibsonia, PA
Stephanie Kaiser grew up in the suburbs of Columbus, Ohio but has called Pittsburgh home since 2008. She attended University of Kentucky where she earned her bachelors of nursing in 2006. She worked in surgical and trauma critical care until 2012. In 2012, she earned her masters of nursing and became a nurse practitioner specializing in oncology. She continued working in oncology until 2023 when she transitioned to staying at home with her 2 boys.
Stephanie met Elizabeth when she was diagnosed and was part of her oncology care team until she passed in 2023. Elizabeth made a huge impact in Stephanie’s life with her courage and love of life. Stephanie hopes to help continue to foster Elizabeth’s wishes to cure this disease and help patients and their families keep making memories.
Colleen Conner Ziegler
ALK+ NSCLC Patient, Board Chair - Lung Cancer Research Foundation
North Rose, NY
After a 22-year career in the pharmaceutical industry, Ms. Conner Ziegler served in a variety of community-focused endeavors, including service on several Boards of Directors and Advisory Boards. Her primary focus prior to her diagnosis was on children’s education as well as woman’s health issues.
She is a lung cancer survivor and active patient advocate, diagnosed in May 2015 at the age of 58 with Stage IV ALK positive Non-Small Cell Lung Cancer. Following her lung cancer diagnosis, she turned her focus to lung cancer advocacy. Her advocacy work includes:
Lung Cancer Research Foundation Chair, Board of Directors. She also serves on the Scientific Advisory Board and the Scientific Executive Committee. She recognizes that research has made her treatment possible.
Instrumental in the development of a Research Advocate program for LCRF
GO2 For Lung Cancer Voices Summit Advisory Committee
Founding member of Life and Breath (LAB), a grass root lung cancer organization, with the goal of raising awareness of lung cancer as well as funding for research
Founding member of ALKFusion, a patient driven organization whose vision is to initiate and support patient-centric research
Currently active ALKFusion representative, Lung Cancer Action Network member, LCRF Strategic Plan Taskforce member
Participated in the Department of Defense Lung Cancer Research Program
Volunteered with the Lungevity Peer-to-Peer mentor program that connects newly diagnosed patients with a mentor to guide them through their diagnosis and treatment
Participated in patient focused videos and print materials on lung cancer diagnosis, advocacy and living with lung cancer and Genentech’s ALK Positivity Project
Participated with GO2 for Lung Cancer annual Voices Summit as a State Co-leader
Co-authored and presented Patient Advocacy poster at the 2019 World Conference on Lung Cancer, Barcelona, Spain
Ms. Conner Ziegler lives in North Rose, New York with her husband Tom, and their dog Riley. They have one child, a beautiful daughter, Taya Ziegler.
Tom Ziegler
Care Partner
North Rose, NY
Tom Ziegler is President of Bridger and Bay, LLC, which is a consultancy specializing in Sales Operations Process Improvement. Prior to his role at Bridger and Bay Mr. Ziegler was President of and a primary owner of Zeller Corporation, a factory Automation and Control distributor headquartered in Rochester, NY. Mr. Ziegler had a long career at Zeller Corp., during which he helped grow the company from 6 employees to 180 employees across 9 divisions. Zeller Corp. was acquired by Kaman Corp. in 2013, after which Mr. Ziegler served as a regional director for Kaman Distribution Group.
Mr. Ziegler has been actively involved in several community-based programs primarily centered on improving educational outcomes for students of the Rochester City School District. He was the sponsor of Zeller Corporation’s engagement with the Hillside Work Scholarship program, which prepares students for both participating in the workforce and for college, who might not otherwise have those opportunities. As part of this role, Mr. Ziegler had the opportunity and honor to mentor many students, several of whom are friends to this day.
After Mr. Ziegler’s wife Colleen was diagnosed with Non-Small Cell, ALK Positive, stage 4 lung cancer in 2015, he has focused his advocacy work and support on efforts to improve outcomes for lung cancer patients.
Mr. Ziegler lives on Sodus Bay in Western New York with his wife Colleen, and enjoys spending time with their daughter Taya..
Advisor and Volunteer Liaison
Jen Cosgrove
ALK+ NSCLC Patient
Glen Rock, NJ
Jen is a 44-year-old married mother of three children (ages 8, 12, and 14) who has dedicated her life to raising and caring for her kids. Diagnosed on June 22, 2017, with stage IV metastatic ALK+ NSCLC at 38 years old Jen now dedicates her free time to lung cancer fundraising and advocacy.
Jen first met Sven and Elizabeth at a video shoot in Nyack, NY in 2018 and they have been friends ever since. Jen is honored to serve as an advisor and volunteer liaison of Libby's Lungs and continue Elizabeth's lasting legacy.
Jen’s family is her everything and gives her the focus and motivation to fight stage IV lung cancer with courage, purpose, and determination. Beach, animal, and French fry lover, Jen is hopeful, faithful, and determined to live each day to the fullest.