This month we honored our superheroes on KIF1A Day and launched new resources and initiatives to improve the lives of those affected by KAND and accelerate research to find a cure. Read this Monthly Momentum update to learn about our community’s progress in April as we strive for a brighter future for our superheroes.
KIF1A Day Highlights
Introducing the League of Sidekicks
Every superhero needs a sidekick! Our new League of Sidekicks appreciation wall has been unveiled! Members of the League of Sidekicks are monthly donors to KIF1A.ORG to show their relentless support for our superheroes. On behalf of the entire KIF1A community, thank you. Your commitment offers hope for a brighter future for those affected by KIF1A Associated Neurological Disorder.
Ovid Therapeutics’ Message for Families on KIF1A Day
The CEO of Ovid Therapeutics, Jeremy Levin, had a special message for KIF1A families on #KIF1ADay. Thank you to the entire team at Ovid for standing with the KIF1A community and working so relentlessly to change the fate of KIF1A Associated Neurological Disorder for our superheroes.
Good Dogg Beverage Shares Their Support on KIF1A Day
The KIF1A community has a very special crew at Good Dogg Beverage standing beside us every step of the way. We thank you for your giving hearts!
Local KIF1A Day Activities
KIF1A superheroes, families, and friends from around the world honored our relentless community on KIF1A Day! Check out a few highlights below, and make sure you read through this newsletter to see new and updated superhero stories.
KAND Conference Update
While we are all eager to gather in person for the next KAND Family & Scientific Engagement Conference, KIF1A.ORG will be hosting a virtual conference around August 2022. However, we are going all in on an in-person conference in 2023! If you are a KAND patient or family member, please answer a poll in the KIF1A Family Support Group to let us know your preferred months for KIF1A.ORG to host this event in New York City in 2023.
Immediate Call to Action! EEG Study Underway
KIF1A Families: want a chance to win $500 USD?! Easy peasy! Just send in EEG data to Columbia University by June 15th for a chance to receive one of five $500 USD gift cards! Even better—by contributing your data, you’ll help the KIF1A Research Network gain a better understanding of care and treatment strategies for epilepsies associated with KIF1A Associated Neurological Disorder.
NEW RESOURCE: One Stop Shop for Family Resources Now Available!
As part of KIF1A.ORG’s mission to help improve the lives of those affected by KAND, this private resource page is now available to KAND patients, parents, families, and caregivers in their search for KAND-related information and resources. Here you can also find recaps of community calls, recordings of important community meetings, and so much more! This is a password-protected page. Learn more in the KIF1A Family Support Group or email firstname.lastname@example.org.
KAND Patients and Families: Join Our Family Community Calls!
Quarterly Community Call: Join KIF1A.ORG and our family community on Saturday, May 14, 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!
Do You Need Help with Medical Equipment?
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. In case you missed it, check out our March blog announcement for more details about this exciting program!
KAND Published in Children’s Neurology Foundation Disorder Directory
We are excited for KIF1A Associated Neurological Disorder to be published in the Child Neurology Foundation’s Disorder Directory! CNF’s Disorder Directory serves as a source of information and current resources related to child neurologic conditions to help educate patients, families, and doctors. In collaboration with KIF1A.ORG, Dr. Wendy Chung, leading KAND researcher and clinician, authored this new resource to provide an overview of KAND symptoms, causes, testing, treatments, outlook, and more.
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. These are their stories. Check out some new and updated superhero stories below, and find the rest of our superhero stories here. Do you have a superhero story to share? Share yours here!
Update: Superhero Emily
Update: Superhero Cam S.
Update: Superhero Brayden
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.