April 28th is KIF1A Day!
Join us in celebration! Topics include:
- Big accomplishments
- Treatment Accelerator Program (TAP) Fundraiser
- Fun KAND warrior dance video
Donate to our TAP Fundraiser in honor of KIF1A Day.
ASCEND Enrollment Lagging
We need ALL KAND warriors enrolled
ASCEND is our Natural History Study.
The goal is to:
- Count the number of patients with KAND
- Identify symptoms
- Map the degenerative course overtime
- Develop care guidelines for clinicians
- Create a trial ready community
This is all online. It takes 2-6 hours of your time. Translation is available through Boston Children’s Hospital.
If your patient is not enrolled, they are not contributing to the progress of learning about KAND.
2nd Quarter Community Call, May 16 @ 130-3pm ET
Community Member Spot lights!
- Amanda and Emma’s INSIDE EDITION news segment
- Sloane’s upcoming ASO treatment
- Meet our newest Superheroes – Summer, Sofia, and Harrison
- Superhero submission form
Science Saturday Recaps
- Sparking insight into Autism
- Stem cells for studying Hereditary Spastic Paraplegias
- Whole genome sequencing increases diagnosis with Charcot-Marie-Tooth Disease
- Whole exome sequencing in Hereditary Spastic Paraplegia
- Genetic diagnosis utility in patients with CP and motor disorders
- Genetic alterations in Italian study with neurodevelopmental disorders
- Clinical exome sequencing in neonates with suspected hypoxic-ischemic encephalopathy
- Axonal transport defects in neurodevelopmental disorders
International KAND Speech Study
GOAL of 60 patients
Help us learn all we can about Speech in KAND. Enroll today.
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.
