Staff
UDNF Team
Danielle Carnival, Ph.D. | she/her
Chief Executive Officer
Danielle Carnival, Ph.D. is a national leader in health, research, and policy. She led the White House Cancer Moonshot from 2021- 2025 which delivered more than 125 federal actions and steps from more than 250 private sector organizations to improve the experience and outcomes for people facing cancer. At the same time, she led a White House team to drive policy and programmatic progress in the areas of research and regulatory infrastructure, public health, and biosecurity, among others. As the inaugural CEO of I AM ALS, Dr. Carnival provided strategic leadership and management for the patient-driven organization that aims to provide key resources to the community and create opportunities for patients to lead progress and cures. As Vice President of the Biden Cancer Initiative, she led organizational, program, policy, and partnership development.Dr. Carnival also worked at the White House from 2010-2017, where she leveraged her scientific expertise to make progress in the areas of health and biomedical research policy, STEM education, and advancing equity and promoting diversity in STEM fields. She was integral in developing the framing and goals for the Cancer Moonshot, managed the team executing on those goals, led multiple White House Science Fairs and the White House Cancer Moonshot Summit, and contributed to signature reports and recommendation implementation from the President’s Council of Advisors on Science and Technology and the President's Job Council. Danielle Carnival earned her Ph.D. in Neuroscience from Georgetown University and a B.S. in Biochemistry from Boston College.
Michele Herndon, DNP, RN, BCPA | she/her
Director of Support
Michele Herndon, DNP, RN, BCPA, is the Director of Support for the UDNF. Prior to joining the UDNF
in 2023, she was a pediatric nurse, leader, and manager in an academic hospital setting. Michele is
also the mother to three children, including 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 a Board-Certified Patient Advocate.
Sarah Marshall, MSW | she/her
Community Program Manager
Sarah Marshall has a dual role at the UDNF both as Community Program Manager and a PEER member 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. For over 20 years, she has worked directly with women, children and families in health care circles to achieve optimal outcomes for all. In addition to working directly with patients, Sarah has leadership experience in health care and legislative advocacy, strategic planning and non-profit organizations.
Jennifer Tousseau | she/her
Navigation Resource Specialist and Senior Patient Navigator
Jennifer Tousseau, a Navigation Resource Specialist and Senior 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.
If you are interested in joining the UDNF team, please send a cover letter and resume to info@udnf.org.