By Luke RosenJuly 11, 2019 Before all this happened, I wrote plays. Before Susannah was diagnosed with a rare neurodegenerative disease; before we started the foundation; before I knew about motor proteins and phenotypes; before special needs; before rare disease policy; before biotech; before that moment in the hospital elevator when everything changed, one of…Read More
KIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder (KAND) and accelerating research to find a cure.
KIF1A Associated Neurological Disorder
KIF1A Associated Neurological Disorder is a rare neurodegenerative disorder with a progressive course. Urgently supporting KIF1A research is critical to discovering a cure for KAND.
We look forward to hosting the largest gathering of KAND caregivers and researchers to date at the 2019 Family & Scientific Engagement Conference. Join us…Friday, August 16, 2019 - Saturday, August 17, 2019 Roy and Diana Vagelos Education Center
104 Haven Avenue
New York City, NY
Team Abby is hosting a Trivia Night in St. Charles, Missouri on September 21, 2019, to benefit KIF1A.ORG. This superhero-themed event will feature prizes, a…Saturday, September 21, 2019 6:00 pm - 9:00 pm St. Charles Borromeo David Dyer Memorial Center
534 North 5th Street
St. Charles, MO
Attend the KAND Conference
Our upcoming conference is a free event that unites families, researchers and medical professionals to improve our understanding of KIF1A Associated Neurological Disorder, its variations, clinical care and the road to finding treatment and a cure.
Learn more about the conference and send us your registration.
On the Blog
KIF1A mom Jenni shares her insights after attending RARE on the Road, a Rare Disease Leadership Tour hosted by The EveryLife Foundation and Global Genes. At this workshop, Jenni connected with fellow rare disease advocates and found renewed hope for the future of the KIF1A community.Read More