Updates from KIF1A.ORG July was an unforgettable month for the KIF1A.ORG community! We had an incredible time connecting, learning, and growing together at the 2025 KAND Family & Scientific Engagement Conference. Thank you to every family, researcher, clinician, and supporter who made this event such a success. If you couldn’t join us—or if you just...| KIF1A
What do worms, a classroom full of students, and members of the KAND family community have in common? A lot more than you’d think! In this blog post, KIF1A.ORG Chief Science Officer Dr. Dominique Lessard describes a unique cross disciplinary experience with multiple scientific stakeholders in the rare disease space, all focused around our holistic...| KIF1A
Join the Movement: Genetic Testing Action Day—July 25, 2025 Empowering Families to Start Genetic Join us for the inaugural Genetic Testing Action Day on July 25! In collaboration with CureSHANK and other rare disease organizations, we’re proud to support Start Genetic—a national movement dedicated to raising awareness about the critical role of genetic testing in... The post Genetic Testing Action Day – July 25th appeared first on KIF1A.| KIF1A
The post 2025 KAND Conference: Nearby eateries, stores, entertainment, and public transit appeared first on KIF1A.| KIF1A
Please note the following updates to the agenda: Thanks for your flexibility as we make these necessary adjustments!| KIF1A
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Characteristics of Sensory Neuron Dysfunction in Amyotrophic Lateral Sclerosis (ALS): Potential for ALS Therapy Overlap between KAND and...| KIF1A
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. Rare Roundup KRIBB develops new gene therapy candidate for hereditary spastic paraplegia This week we’re flipping the format and starting...| KIF1A
Dear KIF1A.ORG Community, As the middle of the year rolls in, we’re filled with excitement and anticipation for our upcoming KAND Family & Scientific Engagement Conference happening July 25–26, 2025 in Boston, Massachusetts! This event is one of our most important opportunities to bring together patients, families, researchers, clinicians, and advocates—all united in our mission...| KIF1A
From KIF1A.ORG| KIF1A
Wearable Digital Data Collection Is On the Horizon: Meet BioSensics KIF1A.ORG is thrilled to announce an exciting new initiative to enhance our natural history study and accelerate progress toward clinical trials: wearable digital data collection in partnership with BioSensics, a leading innovator in digital health monitoring for rare diseases. As part of our efforts to...| KIF1A
KIF1A.ORG Newsletter – May 2025 Dear KIF1A.ORG Community, It has been almost four weeks since I started assimilating into the role of KIF1A.ORG’s new Executive Director and, WOW, what a four weeks it has been. From connecting with community members, to learning about our ongoing and upcoming projects, I am filled with excitement about everything... The post May Monthly Momentum appeared first on KIF1A.| KIF1A
A message from London’s family in New York, USA: London is our beautiful and sassy little 7 year old girl with a BIG personality. London was diagnosed with KIF1A in 2022. It has been a journey and still is but nothing stops London from letting her personality shine. She’s definitely the Queen Bee! London loves... The post London’s Superhero Story appeared first on KIF1A.| KIF1A
A message from Athena’s family in California, USA: Athena is 6 years old. She was diagnosed at the age of 5 when I requested genetic testing for her after speaking to her orthopedic surgeon. We kept thinking we were missing something. Something wasn’t adding up. Her ortho doctor and I decided that we should speak... The post Athena’s Superhero Story appeared first on KIF1A.| KIF1A
KIF1A.ORG Newsletter – April 2025 Welcome Our New Executive Director, Dominique Lessard, Ph.D.! I’m thrilled to share exciting news about the leadership at KIF1A.ORG. Beginning April 14th, Dominique Lessard will officially step into the role of Executive Director, replacing myself, Angie Fuller. Dominique has been a dedicated force within our organization as our previous Chief... The post April Monthly Momentum appeared first on KIF1A.| KIF1A
KIF1A.ORG is dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder and accelerating research to find a cure.| KIF1A
We write about topics of interest to the KIF1A Associated Neurological Disorder community, including care, research and stories from our superheroes.| KIF1A
Will You Join Us for Miles That Matter for KIF1A? This February, we’re challenging ourselves—and each other—to complete 28 miles (or more!) by February 28,...| KIF1A
Science Saturday| KIF1A
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Presynaptic perspective: Axonal transport defects in neurodevelopmental disorders When you get caught in a traffic jam, there can...| KIF1A
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Genetic Alterations in a Large Population of Italian Patients Affected by Neurodevelopmental Disorders We often talk about genetic...| KIF1A
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Whole exome sequencing in Serbian patients with hereditary spastic paraplegia This year we’ve seen several studies investigating the...| KIF1A
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Whole genome sequencing increases the diagnostic rate in Charcot-Marie-Tooth disease Charcot-Marie-Tooth (CMT) disease is an inherited disorder that...| KIF1A
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. Meet our Guest Bloggers! This spring we’ve been quite fortunate to be joined by 6 Master’s students from Columbia University,...| KIF1A