Who we are
cureMEdullo was started by the Carson Leslie Foundation The Carson Leslie Foundation to catalyze the Medulloblastoma community. We seek to partner with pediatric brain tumor foundations, the research consortia network, treating clinicians and their institutions, industry, and most importantly – medulloblastoma patients and their families.
When faced with diagnosis, like many faced with a rare disease, there is no ‘one place’ to share information and advocate. Medulloblastoma families piece together information from their clinical team(s), a diverse array of websites, journal articles, their personal and digital social networks, foundations – and anywhere else they can find information.
The fundraising and research landscape is equally disjointed, with researchers spending significant time identifying and pitching their projects to donors, and donor foundations spending significant time identifying (and vetting) research projects. There is no central, prioritized research agenda for Medulloblastoma.
We aim to change all that!