New Address!

1178 Broadway, 3rd Floor #3535, New York, New York, 10001

Please send all KIF1A.ORG mail (including donation checks) here! Thank you.

November is Epilepsy Awareness Month

#GivingTuesday is November 28th~

Clinical Conversations: Speech and Communication in KAND

 Sunday, December 3 at 5:00pm EST

  • Register here!
  • Join Professor Angela Morgan, co-Director of the Royal Children’s Hospital’s Speech Genomics Clinic and Lead of the Speech and Language team at Murdoch Children’s Research Institute in Melbourne, to discuss genetic speech pathologies, family experiences with communication in KAND, and how speech studies can benefit our community.

US Families Survey: Health Policy and Advocacy

KIF1A is working on developing policy positions and priorities to help expand access to KIF1A treatments, testing, and other healthcare resources beneficial to the KIF1A community in the United States.

  • We want to ensure our advocacy is focused on the issues that truly impact our KIF1A community. Therefore, we are asking you to complete this short 10 question survey on the current barriers your family experiences relating to health insurance coverage, affordability, and access to treatments. 
  • The survey is available here: 

Please complete the survey by December 18, 2023. 

Dr. Dylan Verden at conferences~

Dr. Dylan Verden attended the Society for Neuroscience conference this year on behalf of our community!

  • From November 11-15 he was immersed in expert scientific sessions and meeting with researchers working on KIF1A-relevant research and therapeutics.
  • He is looking forward to connecting our patients and families to many of the amazing opportunities he discovered while attending SFN! Stay tuned for more details.
  • NEXT UP! He will attend the American Epilepsy Society Annual meeting from December 1-5th.

Science Saturday recaps

  • KIF1A mutations have been identified in patients diagnosed with ALS. A recent review describes sensory neuron loss, familiar to the KAND community, as an important therapeutic target for ALS.
  • KIF1A’s C. elegans worm counterpart UNC-104 is responsible for remodeling inhibitory synapses during development, which could have implications for excitatory/inhibitory imbalance in spasticity or epilepsy.
  • A lipid (fat molecule) called PI(3,5)P2 was found to tether KIF1A to synaptic precursor vesicles that help maintain and strengthen neuronal connections. Regulators of KIF1A’s cargo-binding domain

KIF1A.ORG Board of Directors RFA

  • Our board is seeking professionals dedicated to KIF1A.ORG with expertise in legal, finance, nonprofit management, science, biotechnology, patient advocacy, rare disease, and of course the patient and family voice!

Whatever role you play in our community, we need you. Thank you for all that you do to help us realize our mission for KIF1A superheroes everywhere.

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