Choose Your Language:
Caregivers are the bridge of hope, strength and connection that empowers people living with rare diseases to move forward every day. They too, need and deserve love and support.
Caregiver Conversations is a space dedicated to caregivers of individuals living with rare neuroimmune disorders. Led by TSF Ambassadors, this program aims to provide support, education and connection for caregivers from around the world.
Resilient caregiving is a marathon, not a sprint, sustained by radical self-compassion, small moments of self-care, the courage to accept help and the search for meaning in even the most exhausting moments. Explore the resources below designed to assist and guide you in your caregiving journey.
Maria and Trudie present a diverse set of topics focused on the essential role of caregiving in the context of rare diseases.
Select a thumbnail to view each educational session
Maria’s husband, Daniel, was diagnosed with MOGAD in the summer of 2022. Daniel’s initial attack was so severe, he spent nearly 2 months in the hospital and acquired physical and cognitive deficits which still linger many years later.
When Maria is not in caregiver mode, she practices law and enjoys nature walks in SF Bay Area parks with their son, Dominic, and Daniel, when his condition permits.
Maria joined TSF in 2025 to help raise awareness about rare neurological conditions, to work with the foundation to propel research forward, to support caregivers and to advocate for policy changes.
Trudie’s husband, Tertius Retief, was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD) after a long and challenging medical journey. Walking alongside him as his caregiver revealed the profound challenges families face while navigating this rare disease. After his passing in November 2021, she felt called to honor his life and legacy by supporting others on a similar path and became a TSF Ambassador in 2025.
Outside of her role as a TSF Ambassador, Trudie works in publishing and enjoys engaging in community-focused projects, connecting with others who share her commitment to compassion, awareness, and empowerment.
