November 2023 Highlights

November is Epilepsy Awareness Month

• Check out the new Epilepsy in KAND resource
  • Created in partnership with Dr. Tristan Sands

#GivingTuesday is November 28th~

• Our goal this year is $15,000 to support KIF1A.ORG overhead, including our CSO position!
• Fundraiser runs Nov. 20th – Nov 30th.
• If you want a personalized image of your warrior, email Angie@kif1a.org
• Add our fundraiser link to you Facebook posts!
  • https://www.facebook.com/donate/1396364164633492/

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: https://forms.gle/o9nCQVUrrARxnUjW7 

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!
  • Job description and Request for application open through Nov 30th.