Happy Rare Disease Day! Today we are celebrating our collective strength and numbers within our KAND community and with all rare diseases globally. If we all standup and be counted, we will be heard! #rarediseaseday2024 #KIF1A
This month has been busy and full of MOMENTUM! Thank you to everyone behind the scenes working relentlessly on our mission to find a treatment and cure for this generation of KAND warriors.
With hope,
Angie Fuller, Director KIF1A.ORG
Call to Action for all KAND families and supporters that live in the US!
Today, on Rare Disease Day, let’s all band together to reach out to our state’s Federal Senators and Representatives to ask for funding for rare disease research and for genetic testing to be available to all (without having to fight your insurance company.)
Valerie Morris typed up a letter that we can all use as a template. Just copy and edit as needed (if you’d like to), or write your own!
Here is the link to find your Senators and Representatives. Just search your zip code in the box.
Thank you so much everyone! Let’s see how many different states we can cover!
Natural History Study & ASO updates!
This month the Chung Lab completed their first round of long read genetic sequencing to find KAND patients who carry the same “handle” SNP as ASO pioneer Susannah Rosen!
Want to learn more about the KAND Natural History Study and ASOs? Please watch our joint family update with Dr. Wendy Chung, and Dr. Sarah Glass from n-Lorem.
Also check out our updated ASCEND and KOALA webpages for more details.
60 minutes
UPCOMING: Family Q&A session with n-Lorem!
Thursday March 7th, 3pm ET
After hearing from Dr. Glass and Dr. Mignon on Feb 27th about ASO therapies, we are holding a Q&A session with them to help answer additional questions from our community. You can register here. Translation/interpretation services from Wordly will be available.
We also have a 6 question survey you are invited to fill out. It addresses your level of interest and questions for n-Lorem. These results will help guide our discussion on March 7th.
KIF1A.ORG Quarterly Community Call
KIF1A.ORG held our first 2024 Community Update this month:
We welcome our new Board of Directors!
KIF1A.ORG finances and operations update from Angie Fuller
This month KIF1A.ORG held its first Board Meeting of 2024! Our board of directors combines patient perspectives with with expertise in therapeutic development. You can learn more about our new Board of Directors here.
Our Research Network Partners at MCRI in Australia are enrolling an International KAND Speech Study and your involvement is critical to helping our community understand more about the effects of KAND on speech and communication. Since December 2023 we’ve already had almost 20 families complete the study, and over 50 families express interest!
Download and read the research flyer for more details and scan the QR code to fill out the interest form. Lottie Morison will reply back with next steps!
Calling all KAND Families!
We are seeking pictures and videos for our social media campaigns in 2024 ~
First, we would like to create a video compilation of many dozens of KAND warriors dancing/singing/moving however they can to “Fight Song” by Rachel Platten. We will use this during our KIF1A Day campaign in April. Here is a link to the song on YouTube. Please send your videos to social.kif1a@gmail.com
Researchers performed genetic sequencing who had been diagnosed with HTLV-1–Associated Myelopathy, a viral movement disorder, and identified patients with mutations in spasticity, associated genes, including KIF1A.
A review paper discusses the underlying neuronal dysfunction larger disease groups including hereditary spastic paraplegias, sensory neuropathies, and cerebellar ataxias.
A new study uses findings from recent KIF1A experiments to model its walking behavior, and determine why it spends so much time with only one foot on the microtubule.
Last but not LEAST ~
We always need financial support to keep our relentless mission alive!
*Did you know our monthly sustaining members are featured on our League of Sidekicks webpage?! Join the long list of relentless supporters fueling our mission and igniting change!
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.
