Celebrate with us~

On this special day, let us recognize and celebrate our KAND patients and their families, whose courage and perseverance shine brightly as a beacon of great hope for a healthier and brighter future for all KAND patients around the world.

We also want to celebrate the incredible progress we’ve made toward KAND support and treatment in the last year:

  • Over 60 families participated in the KOALA study, establishing a baseline to assess drugs in clinical trials.
  • Susannah Rosen has been undergoing the first ever KAND-specific antisense oligonucleotide (ASO) treatment with n-Lorem.
  • Our partners at the Murdoch Children’s Research Institute launched the first KAND speech study, with almost 40 participants so far.
  • Feedback from our community has driven Research Network projects to investigate understudied KAND symptoms like vision loss.
  • Our Therapeutic Accelerator Program with NeuCyte has established seizure models in patient-derived cells, paving the way for drug screening.

Celebrate with us!

Watch a dance video of our KAND superheroes and listen to their favorite songs on our Spotify playlist!

Learn about our fundraiser

Phase 1 of our Treatment Accelerator Program (TAP) is complete and we are moving onto drug screening in Phase 2.

Donate in honor of KIF1A Day

Help us fuel our hope, and ignite change for our KAND superheroes! Donate today and help us start Phase 2 of our TAP program.

$35,000 of $70,0000 raised for our Fundraiser for Phase 2 of our Treatment Accelerator Program