Staff

UDNF Team

Amy Gray | she/her

Chief Executive Officer (CEO)
Amy leads the Undiagnosed Diseases Network Foundation (UDNF) with more than two decades of extensive fundraising, operations, and patient advocacy experience shaped by her previous roles working with four national non-profit voluntary health organizations. As CEO, Amy's role is to work with the board and staff to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions. Prior to joining the UDNF, Amy was the CEO of the Charcot-Marie-Tooth Association. She has also held leadership roles at the Parkinson's Foundation, Crohn's and Colitis Foundation, and the Muscular Dystrophy Association. Amy is a graduate of St. Cloud State University in Minnesota.

Michele Herndon | she/her

Program Director
Michele Herndon, MSN, RN, is the Program Director of the UDNF’s Patient Navigation Program. For the past two decades, she has served as a pediatric nurse, leader, and manager in an academic hospital setting. Michele is also the mother to Mitchell who enrolled in the UDN in 2017 after five years of symptoms. After genetic sequencing and a model organism study using fruit flies, his gene mutation was identified by the UDN. Mitchell died in 2019 from the ultra-rare disease that was ultimately named after him, Mitchell Syndrome. Michele and her family started the Mitchell & Friends Foundation to support families and raise both awareness and money for research into Mitchell Syndrome. Michele lives in St. Louis, MO and is currently working to complete her Doctorate in Nursing Practice at the University of Missouri-Columbia.

Christin Siscoe | she/her

Patient Navigator
Christin Siscoe, MSN, RN, CPN, a Patient Navigator with the UDNF, has 18 years of nursing experience as a pediatric nurse, educator, and administrator. She has obtained numerous national certifications and awards for her compassionate care, innovative leadership style, and profound advocacy work. Christin also participates in healthcare mission trips to Bonao in the Dominican Republic where she provides free ENT surgeries yearly. She currently resides in Rayville, Louisiana with her sons, Ayden and Cooper, and niece Elaina. Cooper is a UDN patient and attended the DUKE site, where he was given a partial diagnosis of hereditary pancreatitis. Cooper and Christin still await his rare autoimmune/autoinflammatory diagnosis. Through Christin’s involvement with the UDN as a PEER Member, she dreamed of the day she could combine her advocacy work and nursing experience into a full-time job. With her recent move to a rural area in Louisiana, she is passionate about making sure all participants are well-served equitably.

Dana Sayer | she/her

Patient Navigator
Meet Dana, your dedicated Patient Navigator at UDNF. With nearly a decade of experience in Law Enforcement, Dana has seamlessly transitioned her passion for serving the community into the healthcare realm. Over the past few years, she has devoted herself to guiding patients through the intricate healthcare system, ensuring a smooth journey throughout their continuum of care. Fluent in Spanish, Dana brings empathy and understanding to her role, ensuring all patients feel heard and supported. Drawing from a deeply personal commitment, Dana has played a pivotal role in helping a dear friend navigate through her own undiagnosed disease over the past decade. This firsthand experience fuels Dana's empathy and understanding, making her not just a navigator but a compassionate advocate for those seeking answers. With Dana by your side, you're not just navigating; you're empowered.

Jennifer Tousseau | she/her

Patient Navigator
Jennifer Tousseau, a UDNF Patient Navigator, has over 10 years of experience as a patient advocate, managing initiatives that help support and improve rare disease patients' diagnostic journeys. Along with guiding patients to gain access to healthcare resources, she has co-authored medical literature and educational resources, supported the organization of major medical conferences, and represented patients in influential medical working groups. Her advocacy work started with her son's diagnosis of a rare autoinflammatory disease at the age of two, which led her to join the Autoinflammatory Alliance Board of Directors. As a patient navigator for the UDNF, she is committed to helping guide, support, and empower undiagnosed and rare disease patients and their families and caregivers facing complex medical challenges.

Mary Morlino | she/her

Patient Navigator
Mary has over 16 years of personal and professional experience understanding the challenges patients and families face during an undiagnosed disease journey. Diagnosed with Sarcoidosis, a multi-system rare disease, after a 7 year diagnostic odyssey, she is dedicated to providing support and guidance to others navigating their own paths. Previously, she worked at Global Genes and The EveryLife Foundation for Rare Diseases collaborating with patients, patient advocacy organizations, researchers, medical professionals, legislative representatives and other changemakers to identify and develop initiatives to enact improvements for the patient lived experience. She also serves as the Global Sarcoidosis Clinic Alliance Support Leader (GSCAS) with Johns Hopkins Medical Center for Foundation for Sarcoidosis Research (FSR), Mary is also the founder of MarylandRARE, a state based Patient Advocacy Organization. Inspired by her nephews, who have Muscular Dystrophy, and their efforts with disability advocacy, she is passionate about helping others on their unique journeys to find answers, resources and opportunities to improve their quality of life.