Happy May from KIF1A.ORG! Thank you all for reading about what we’ve been up to this month, including:
- NEW KIF1A Documentary: Available for viewing NOW
- KIF1A.ORG X Chung Lab: The partnership continues
- Science In Action: Dr. Verden on stage
- KIF1A.ORG On the Go: Dom and Dylan take on Boston and NYC!
KIF1A Global Documentary Available for Steaming NOW!
It is with great honor and excitement we share that a NEW documentary centered around our KIF1A community has been released for viewing!
Join journalist Benjamin Hall in “Hope Starts Here: Murdoch Children’s Research Institute” as he follows three families battling a rare childhood disease while scientists at the Murdoch Children’s Research Institute race against time to develop treatments. This documentary was made possible through partnership with the Fox Coorperation, Murdoch Children’s Research Institution, and our Australian KIF1A Community.
Thank you to all involved in this moving piece, highlighting the strength of the KIF1A community, the dedication of KIF1A researchers, and the urgent need for treatments and cures. Click the buttons below to watch!
KIF1A.ORG Accelerates KAND Clinical Research with Continued Support of Chung Lab at Boston Children’s Hospital
For nearly a decade, Dr. Wendy Chung and the Chung Lab have stood alongside the KIF1A community with unwavering dedication, compassion, and purpose. From day one, Dr. Chung has helped shape the path forward for families affected by KIF1A mutations by advancing research and turning urgency into action.
As we continue our partnership with the Chung Lab at Boston Children’s Hospital, we reflect on our progress, built through years of trust and collaboration. We are deeply grateful for Dr. Chung’s leadership and honored to continue this journey together in relentless pursuit of better care and treatments.
It is with great enthusiasm that we announce a significant next step in our long-term partnership with the Chung Lab. Read more below to learn about the progress we’ve made together so far and our goals for the future of our KIF1A community.
KIF1A.ORG Chief Science Officer Selected to Present at 4th Annual Nasal Formulation & Delivery Summit
We’re proud to share that Dr. Dylan Verden, KIF1A.ORG’s Chief Science Officer, spoke at the 4th Annual Nasal Formulation & Delivery Summit on May 21. Dylan’s presentation, “Reimagining Rare Disease Treatment Through Intranasal Delivery to Transform Patient Experience,” highlights the importance of innovation, accessibility, and patient-centered design in rare disease research and care. We are honored to have Dylan representing both the KIF1A community and the broader rare disease community on this stage. Thank you Dr. Dylan!
KIF1A.ORG On The Go: Dominique and Dylan Take On Boston and NYC!
Executive Director, Dominique, and Chief Science Officer, Dylan, have had quite the month bringing KIF1A.ORG to both Boston and New York City this May! During these trips, they met with clinicians, researchers, institutions, and so many other stakeholders leading compassionate initiatives for our KIF1A community. Thank you to all who welcomed us into your offices, clinics, labs, and more! ❤️
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
