KIF1A.ORG has partnered with Research Network members at MCRI in Melbourne Australia to launch a speech study with Professor Angela Morgan and Lottie Morrison.

This study aims to identify and characterize speech and non-verbal communication in KAND patients and shed light on commonalities among our patients. This study will also allow experts to identify helpful communication aides, therapies, and speech biomarkers for KAND which could be used in future clinical trials.

Participating in this study takes around 3 hours. The first 2 hours are spent online completing questionnaires. The 3rd hour is spent attending a live Zoom meeting with Lottie Morison to assess the patient’s communication abilities in real time. The study is provided in multiple languages as well!

Visit the Private Family Resource page to watch the Community Call discussing this study.

You can read more details on the informational flyer below, and enroll in the study by scanning the QR code below or using this link.


Last month we set a secondary goal of enrolling 50 patients in the study, after accomplishing our first goal of enrolling 30 patients! Thanks to our community’s engagement over the past 2 months, 17 families have completed the study, 25 are in progress, and 9 more have expressed interest with MCRI!

Every participant makes this study that much stronger and gives us more information to assess and improve speech in KAND.

If you have any questions for KIF1A.ORG, please email us at We look forward to this opportunity with MCRI and to better understand our disease and its effects on communication, language, and speech!