22 Feb Thank you, CZI!
TESS Research Foundation exists to improve the lives of children and families affected by SLC13A5 Epilepsy, and our goal is to ensure that no one is alone on their journey. Two years ago, the Chan Zuckerberg Initiative (CZI) brought our mission to life when we were invited to be a member of the Rare as One (RAO) project. As a RAO grantee, we were awarded a $450,000 capacity-building grant and the opportunity to build and strengthen partnerships with 29 other organizations in the rare disease space. Today, we are thrilled to share that CZI has awarded TESS an additional $150,000 and continued engagement with the RAO network (which now includes 50 patient-led organizations in the rare disease space) for another year! We are deeply grateful for CZI’s continuing generosity and unwavering support of TESS Research Foundation.
Our participation as a RAO grantee has been transformative. CZI’s endorsement of our work has opened doors and allowed us to share the voice of a key stakeholder: the patient. We have invested in our team: we now have a research director who drives our research progress and a development director who is tasked with ensuring that TESS is sustainable. CZI has provided extensive professional development opportunities with multi-part trainings and access to experts. We have collaborated with and learned from leaders of diverse backgrounds and skill sets, all of whom are devoted to understanding and curing rare disease. Most importantly, CZI recognizes the power of patient-led organizations and our ability to use the passion and urgency of our patient voice to help drive strategy. Our research landscape looks very different than it did several years ago: we now have millions of dollars supporting SLC13A5 research, hold US-based and international conferences each year, and have a gene therapy treatment for SLC13A5 Epilepsy in development.
Thank you, CZI and RAO, for believing in TESS Research Foundation and for your confidence in our work. We know that we are not alone in our journey and look forward to our continuing partnership!