PEER Team
UDNF PEER was initially formed under the umbrella of the UDN in 2017 as a patient advisory group to the UDN and its sites. Over the years, it has grown from an insular patient advisory group with the UDN to an influential force towards the sustainability of the UDN and the inception of the UDNF, playing a dynamic role in supporting UDN participants while also considering the broader needs of the undiagnosed community. UDNF PEER members are active in publication of the UDNF PEER newsletter 3 times a year, sponsoring the Tell Me More Lecture Series, engaged with the UDN Coordinating Center and sites as issues arise, and participate in UDNF Board Work Groups in order to support the UDNF mission: to improve access to diagnosis, research and care for all individuals living with an ultra rare or undiagnosed condition.
PEER Team
Kara Anderson | she/her
Kara Anderson lives in Virginia and works at a university as a postdoctoral fellow. She was lucky enough to be given a diagnosis at the Duke site in 2018. That same year, she joined PEER. She enjoys her involvement with PEER, as the group has not only helped others, but has also helped her navigate her own condition. The trials and tribulations of a rare disease does not stop at a diagnosis, and she is grateful the UDNF offers resources for every part of this journey. Outside of PEER, she loves cooking and hanging out with her cat, Kit. She hopes one day to make Kit an influencer on Instagram so he can start contributing to the household income.
Sarah Marshall | she/her
Sarah Marshall has been on UDN(F) PEER since 2018. Her work in undiagnosed and ultra-rare disease is fueled by the lived experience of caring for a child who has been undiagnosed and also by the inspirational work and stories of others in the undiagnosed community. With a Master’s Degree in social work, she is no stranger to advocacy work. In tandem with her rare disease advocacy, she works as a case manager for women and children, primarily immigrant and other marginalized groups, who live with chronic disease. Her work helps ensure that their basic needs are met so that they can prioritize treatment to lead healthy lives. Prior to this, she worked for over 10 years in maternal and child health, supporting families as a doula, a childbirth educator and was president of a local non-profit whose mission was to educate families in the childbearing year. In various capacities, she has partnered with patients and families since 2005 to amplify their voices and advocate needs in health care. She resides in Minnesota and is the proud mom to four almost fully grown and launched young women.
Christine McGarvey | she/her
Christine McGarvey and her daughter, Brigid (pictured), live in Springfield, PA. Both Christine and her daughter have been participants in the UDN since late 2021 and have been working with the CHOP site. Christine has been on a long diagnostic odyssey and at age 3 her daughter began her own parallel diagnostic odyssey. Christine is the Pennsylvania State Ambassador for the National Organization of Rare Disorders (NORD.). Prior to becoming a rare disease advocate, Christine McGarvey received her bachelor of science degree (cum laude) in Biochemistry from the University of Delaware. Christine also received a master’s of science degree in Cell and Molecular Biology from the University of Pennsylvania School of Medicine.Christine was awarded a full fellowship for her graduate studies at Penn. She was also awarded a National Institute of Health grant for her graduate research into the role of Spt7 in transcription. Currently, Christine hosts several events including Pennsylvania’s rare disease day. She is also director of the UDNF PEER “Tell Me More” lecture series. Her rare disease advocacy work has been the most fulfilling role she has held to date. She personally knows the challenges that one faces when living with a rare/undiagnosed disease and having a child with such a disease. She knows what it feels like to be a zebra searching for a diagnosis in a medical system that was created for horses.
Nikki Patrick | she/her
Nikki Patrick is a mother of 4 living in the suburbs of Chicago. Nikki became involved in the world of rare and undiagnosed disease when her youngest daughter, Felicity, was born in 2019. During her 21 months of life, Felicity fought a disease that was never diagnosed and progressively took away her abilities until it took her life in late 2020. Nikki has turned her pain into passion and is very dedicated to coming alongside families in their undiagnosed and rare disease journeys. Nikki holds out hope that one day they will receive and answer for Felicity's challenges and that it will help another family avoid some of the pain and heartbreak that comes with not knowing what is slowly destroying your beautiful child. Nikki works in a therapeutic high school, enjoys watching her kids play sports and her oldest daughter play the tuba, and laughing at the antics of their cat, Poppy.
Casey Robertson | she/her
Casey Robertson, E.Ds., lives in Mississippi with her husband and daughter Kylie. Kylie, currently undiagnosed, is now 17, and has been a part of the UDN since August of 2022. Our undiagnosed odyssey has led us all over the United States to seek the best of care. We have been on the journey for a diagnosis since she was about 3 years old. Casey works in the field of blindness through the Professional Development Research Institute on Blindness at Louisiana Tech University. Casey loves everything about advocacy, gaining services for students that are not being educated adequately, and helping families in need. Casey is currently the newsletter editor and loves working with UDN sits and families to capture stories to help other participants. Outside of the full-time job of being a mother, managing health care for her daughter, and her work at the university and advocacy. Casey loves to kayak, read, and ride her bike.
Jessica Swanson | she/her
Jessica Swanson is the founder and CEO of Summit Health Services Inc., an organization specializing in Applied Behavior Analysis (ABA) with 16 locations across the U.S. As a Board Certified Behavior Analyst (BCBA), Qualified Behavior Analyst (QBA), Licensed Behavior Analyst (LBA), and Certified Autism Specialist (CAS), she also serves on the board of directors for the QABA (Qualified Applied Behavior Analysis). Additionally, Jessica heads Redpoint Consulting Inc., which oversees the management of small start-up companies, and she advises Pathfinder Health. Beyond her professional pursuits in behavior analysis, Jessica is co-chair of the UDNF PEER (Undiagnosed Disease Network Foundation Participant Engagement and Empowerment Resource), where she advocates for individuals with rare diseases. Jessica is married to an active duty officer and is a mother to two children. She lives in Huntsville, Alabama.
Stephanie Tomlinson | she/her
Stephanie Tomlinson is the Co-Chair of the UDNF PEER. She is an accomplished healthcare policy strategist experienced in legislative and regulatory advocacy at the state and federal levels. With a robust background in Patient and Family Support Coordination, Stephanie has also been instrumental in developing a global resource to aid patients diagnosed with Mitochondrial Disease in finding necessary resources. For three seasons, Stephanie hosted the Energy in Action Podcast, where she engaged with industry leaders on cutting-edge research findings and families navigating the challenges of being undiagnosed. Her passion for healthcare advocacy was ignited over 20 years ago when her son faced an undiagnosed rare genetic condition, revealing the complexities and challenges of obtaining quality medical care, education, and maintaining family balance. Stephanie's dedication to improving the healthcare landscape inspires her work and advocacy.