Category: Living with KAND

Watch the news interview here: https://abc30.com/corcoran-police-boy/11802806/ FRESNO, Calif. (KFSN) — A little superhero got some big recognition. The Corcoran Police Department stepped up to celebrate a brave boy battling a rare disease. Meet two-year-old Beau. He’s a fun, energetic boy who is an inspiration to everyone around him. Beau is living with KIF1A, a neurological disorder…

https://www.giornaledibrescia.it/storie/malattie-rare-unassociazione-per-ale-e-i-bimbi-con-la-mutazione-del-gene-kif1a-a0q18a5s

Link to Inside Edition 10 minute interview with Amanda and Emma. By ANDREA SWINDALL, First Published: 8:34 AM PDT, April 6, 2024 KIF1A Associated Neurological Disorder is a rare severe neurodegenerative disease caused by mutations in the KIF1A gene, Amanda Burrett says. Only about 550 known families have been affected. Amanda Burritt’s daughter Emma is living with…

In this guest post, Arica Altobello, Speech-Language Pathologist, caregiver and friend to KIF1A superhero Sadie, shares her experience planning an inclusive KIF1A Day event at Sadie’s elementary school in April. The next official KIF1A Day is April 28, 2022, but every day is an opportunity to teach others how to be a friend to our…

To date, roughly 300 individuals have been diagnosed worldwide with KIF1A Associated Neurological Disorder (KAND). These three families have three very important things in common: their children’s diagnosis, gene variant, and location!

By Luke Rosen Susannah does not wear pajamas to bed, she wears battle gear. After her bath is finished, teeth brushed, stories read and songs sang, it is time for the grueling marathon that is Susannah’s rare, nocturnal epilepsy. Her nine-year-old brother, Nat, flies into the bedroom like Superman and hugs her tight. “Night Shasha!”…

At the 2019 KAND Family & Scientific Engagement Conference, we asked families affected by KIF1A Associated Neurological Disorder (KAND) to help people understand their challenges and what matters most to them.

KIF1A parent Anouk shares her reflections on loss, resiliency and friendship after meeting other KIF1A parents for the first time at the KAND Conference in New York City.

KIF1A parent Anouk shares her reflections on loss, resiliency and friendship after meeting other KIF1A parents for the first time at the KAND Conference in New York City.

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 my jobs was teaching high…

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.