By Joana Karoshi | Staff Writer
The Rare Neurological Disorder Foundation will host its inaugural Spring Assembly, “Meet the Fellows,” at 1 p.m. Saturday at the Mayborn Museum Complex, bringing together students, researchers and advocates working in rare neurological disorders.
The event will feature presentations from clinicians and researchers across institutions, including UT Southwestern Medical Center, Baylor College of Medicine and Harvard Medical School. The program will also highlight RNDF’s student fellows and their ongoing projects within the organization’s first year.
Greatness Adewumi, RNDF executive director and Houston senior, said the fellowship is currently focused on building the foundation of the organization while beginning to connect with external partners and advocacy groups.
“Right now, we’re doing a fellowship with 15 students,” Adewumi said. “We’re forming projects that can support specific neurological communities and beginning to partner with patient advocacy organizations and our advisory board to guide what we’re building.”
Fellow and Temecula, Calif., junior Riley Cachat said the organization’s goal this year is to establish structure before expanding into measurable outcomes.
“The main objective is to create the governance structure and outline for how we want the organization to run,” Cachat said. “That way, when we transition into more formative years, we have a solid foundation to actually produce measurable outcomes aligned with our goals.”
Houston sophomore Nicolas Boza said fellows are also developing individual projects intended to serve as tools for outreach to neurological communities, though the organization is still in its early stages.
“We’re all developing our own projects that will eventually be used as tools for RNDF to reach those [with] neurological disorders,” Boza said.
One of the gaps RNDF fellows aim to address is the lack of student-led infrastructure in rare neurological disorder advocacy, as well as the need for stronger collaboration with patient communities.
Adewumi said the organization is actively working to avoid making assumptions about patient needs.
“We’re not just guessing what we think would be best,” Adewumi said. “We’re actually hearing directly from patient advocacy groups and organizations about what they feel would be most supportive.”
Cachat, who is pre-law and studying psychology, said her interest in the field comes from both personal experience and the broader gaps she sees in healthcare systems.
“Even if you’re not directly affected by a rare neurological disorder, you’re still affected by the healthcare system,” Cachat said. “Collaboration improves treatment, care quality and puts the patient first instead of treating symptoms in isolation.”
Attendance for the Spring Assembly is limited and requires prior registration. The registration form is available here.
