Funding to Strengthen Organizational and Research Capacity to Accelerate Research for KCNQ2-Related Disorders

We are thrilled to announce that the Chan Zuckerberg Initiative (CZI) has selected the foundation to receive a Rare As One Network grant. This award will be critical in accelerating operational efforts and supporting individuals and families impacted by KCNQ2-related disorders.

“We are deeply grateful to the Chan Zuckerberg Initiative for this incredible opportunity,” said President Jim Johnson, KCNQ2 Cure Alliance. “Their commitment to solving some of the world’s most complex challenges aligns perfectly with our mission to find a cure for KCNQ2-related disorders. With CZI’s generous financial and operational support, we are empowered to expand our infrastructure, which will be pivotal in driving transformative change for our community.”

Over the five-year duration of the grant, the KCNQ2 Cure Alliance will use this grant to strengthen our  organizational infrastructure to enable us to:

• Support Research and Science: Hire key personnel, such as a Chief Science Officer, to guide scientific strategy and develop essential resources like a patient registry to support research collaborations and scientific advancements.
• Strengthen Community Support: Develop programs that provide vital resources and education for families, caregivers, and medical professionals, ensuring they have the tools they need to understand better and manage KCNQ2-related conditions.
• Advocacy and Awareness: Initiatives to raise awareness about KCNQ2-related disorders, amplifying the voices of affected individuals and families to improve policies and support systems.
• Foster Global Collaboration: Connect with international research communities and partners, driving progress through shared knowledge and unified efforts across borders, benefitting from the Rare As One Network and training program.

“We believe that this funding and accompanying network and programs will not only strengthen the Foundation but also bring us closer to our vision of unity, hope, strength, and love for those affected by KCNQ2,” added Scotty Sims, KCNQ2 Cure Secretary and Co-Founder. “We are excited to see how this investment will catalyze growth and innovation, ultimately improving the lives of those we serve.”

The KCNQ2 Cure Alliance looks forward to working hand in hand with CZI, the Rare As One Network, and the KCNQ2 community to make a lasting impact. We are taking significant strides toward a future where KCNQ2-related disorders are better understood, treated, and eventually cured.