SCN8A Alliance Awarded CZI Grant to Advance Our SCN8A Clinical Research Network

We are honored to be selected as one of 30 rare disease non-profit organizations to receive the Rare As One Network grant, made possible by the Chan Zuckerberg Initiative DAF, an advised fund of Silicon Valley Community Foundation. This is a five-year, $800,000 grant that provides extensive support, including training, mentoring, capacity building, research, and network development to grantees in order to meet their missions. With this support, the SCN8A Alliance will build on the Global SCN8A Research Roadmap and work with partners to advance the work of a global collaborative research network for SCN8A.

“We are incredibly grateful to the Chan Zuckerberg Initiative for this investment in our work and the SCN8A community.” shared Executive Director Gabi Conecker. “We’ve watched other Rare as One organizations thrive and believe that with CZI’s generous financial and capacity-building support, our community has been given an incredible opportunity to get closer to our mission, faster. We applaud the approach that CZI is taking to invest in patient-led organizations to improve the lives of people affected by rare diseases.”

Patient communities are the agents and architects of their own change. We aim to lift up rare disease communities, providing them with resources and tools to be more effective advocates for—and partners in—research.
Rare As One website

The grant will enable us to focus on priorities of both families and our science partners and will accelerate research that supports transformative new treatments, improves care, and develops strategies to manage and mitigate the many non-seizure issues impacting the SCN8A population.

This grant will allow us to take some critical steps to building our infrastructure and operations including:

  • Support Advancement in SCN8A Research: The grant will allow us to continue to build on the work of the SCN8A Global Consensus on Care and Treatment and the forthcoming Research Roadmap as well as to hire key personnel to advance our mission to bring to fruition better care, treatments and quality of life for SCN8A families.
  • Strengthen and Convene Community: The SCN8A Alliance does extensive education and support for SCN8A families and medical professionals, and these resources will only continue to improve and expand as a result of this support.
  • Increase Global Collaboration: We will continue to work with our international partners to collaboratively advance the goals of our community.

We look forward to this incredible opportunity to work with the leadership of CZI, Rare As One Network partners, and the entire SCN8A community to advance the science and research of SCN8A as we collaborate for a cure.