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Hello Friends

Get those calendars ready! We have some important events and announcements coming your way. It’s also time to catch up on all that’s happened in the KIF1A.ORG community this month and what we’re looking forward to in April.

KIF1A.ORG Introduces Helping Hand for KAND

Equipment deemed medically necessary should never be inaccessible for our friends diagnosed with KIF1A Associated Neurological Disorder (KAND). Our newest initiative, Helping Hand for KAND, provides additional support and extends a helping hand by reducing financial stress on families affected by KAND. Check out our blog announcement for more details about this exciting program!

Applications will open on Monday, April 4, 2022, at 4:00 p.m. Eastern Daylight Time (New York). Visit the Helping Hand for KAND page to learn more.

Families: Check Your Email for a Natural History Study Survey!

If you’ve been enrolled in the KIF1A Natural History Study managed by Chung Lab for more than six months, you should have received a request via email in early March to submit an updated Vineland-3 survey to help researchers understand how KAND affects adaptive behavior and daily life. If you haven’t received an email or if you aren’t sure about your enrollment status, please email Chung Lab at

Community Highlights

NewYorkBIO’s Patient Engagement Summit

Join us virtually on April 6th at NewYorkBIO’s Patient Engagement Summit! This free, annual event brings together patients, advocacy groups, and life science and biotechnology leaders to share engaging content, new perspectives and important conversations. Founder of KIF1A.ORG, Luke Rosen, will be part of the panel on “The Future of ‘Patient-Centric” to discuss best practices as well as still-untapped opportunities for patient voices in the bioscience industry.

KAND Patients and Families: Join Our Community Calls!

We have two family community calls scheduled in April. Contact us at for information on how to join in on the learning and fun!

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CRISPR Discussion and Q&A: Join us Saturday, April 2, 2022, at 3:30 PM Eastern Time (New York City) / 8:30 PM BST (London) / Sunday at 5:30 AM AEDT (Melbourne) as we learn more about CRISPR technology with Dr. Dylan Verden, KIF1A.ORG‘s Research Engagement Director, followed by a Q&A session to have your CRISPR-related questions answered!

Quarterly Community Call: Join KIF1A.ORG and our family community on Saturday, April 30, 2022, at 3:30 PM Eastern Time (New York City) / 8:30 PM BST (London) / Sunday at 5:30 AM AEST (Melbourne)!

We will be having community calls on a quarterly basis to help keep up with all the activities and progress we’re making. Patients, parents, family members and caregivers are welcome!

April 28th Is KIF1A Day!

Every year on April 28th, we honor our superheroes battling KIF1A Associated Neurological Disorder. Connect with us on social media and our event page throughout the month of April for updates on how you can join our most urgent mission to cure KAND.

Wanted: Superhero Stories

Do you wish more people understood what it’s like to be impacted by KIF1A Associated Neurological Disorder?

Finding treatments for KAND starts with awareness: we need more families to have a correct diagnosis, more clinicians to know how to better care for patients, more scientists to dedicate their talents to discovering treatments, and more people to support our mission. Our superheroes are the heart of our community and mission. They are our why. Help us shine a light on KIF1A superheroes by sharing your story on the KIF1A.ORG blog. Whether you’re a patient or family member, regardless of where you live or what language you speak, submit your story below!

Research Highlights

KIF1A.ORG Initiates KOALA Study with the Chung Lab to Accelerate Path to Clinical Trials

In case you missed it, last month KIF1A.ORG announced the initiation of the KOALA Study and the name of our KOALA mascot, Kandy. Read more about how this study will accelerate the path to clinical trials by clicking below.

What’s next for families? We’re working closely with the Chung Lab to finalize the scope of the KOALA Study and how patients and families can participate in clinical assessments at Columbia University Irving Medical Center in New York City. The first step to become eligible for the KOALA Study is to enroll in the Natural History Study, which can be completed online and/or over teleconference. Learn more about the Natural History Study here, and connect with a Study Coordinator at Chung Lab by emailing to get started.

$100,000 XSeed Award from Deerfield Management to Advance KAND Therapeutics

KIF1A Research Network members Dr. Arne Gennerich and Dr. Hernando Sosa at the Albert Einstein College of Medicine received a $100,000 XSeed Award from Deerfield Management to advance KAND therapeutics! Thank you to Dr. Gennerich and Dr. Sosa for your continued commitment to our mission to cure KAND!


Every week, we see advancements in KIF1A research and therapeutic development for rare and neurodegenerative disorders, and we want you to stay informed. If you’ve been behind on our weekly #ScienceSaturday, it’s a good time to catch up. What topics are you interested in learning more about? Sending us an email at to suggest articles or content!

Patient-Focused Drug Development: Methods to Identify What Is Important to Patients

The U.S. Food and Drug Administration recently released guidance for industry and other stakeholders⁠—Patient-Focused Drug Development: Methods to Identify What Is Important to Patients. This is a must-read for anyone involved in the drug development process. But are you wondering when you’ll fit this into your reading list? A group of rare disease patients and caregivers came together to read the guidance in this video for busy professionals and advocates to watch/listen to the guidance on the go. We all have a role to play in drug development. Thank you to the FDA and all the stakeholders involved in developing this guidance to improve the process and outcomes for patients in need of treatments.

To keep up with the progress we’re making thanks to your support, sign up for our monthly newsletter and emails!

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.

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