Monthly momentum header May 2022
Hello Friends

The month of May was full of momentum! Our partners at Columbia University Irving Medical Center are now enrolling patients in the KOALA Study to advance KAND research and therapeutic development! Families: check out this newsletter to find out how to enroll and learn about how KIF1A.ORG can support your travel to New York City to participate in this vital research study.

This Monthly Momentum update is also full of community stories, resources, and an eager invitation to the entire KIF1A.ORG community to mark your calendars for the 2022 Virtual KAND Family & Scientific Engagement Conference! Read on to see our Save the Date!


Columbia University Now Enrolling Patients in the KOALA Study

KIF1A.ORG and members of the KIF1A Research Network from around the world are working relentlessly to discover treatments and cures for KIF1A Associated Neurological Disorder. As potential therapeutics are being explored in pre-clinical studies every day, our KAND community must get ready for the world’s first clinical trials for KAND treatments.

The KOALA Study is an opportunity for patients and families to advance KAND research, and get us closer to treatment, by participating in clinical assessments at Columbia University Irving Medical Center in New York City. The KOALA Study (KIF1A Outcome measures, Assessments, Longitudinal And endpoints Study) is led by Principal Investigator, Dr. Wendy Chung, and a team of specialists who will perform standardized assessments with KAND patients to understand how KAND symptoms develop and change over time. 

Visit our KOALA Study page to learn more about the study, how to enroll, and how KIF1A.ORG can support your family’s travel to New York City to take part in KAND research!

Save the Date: KAND Conference on August 13, 2022

Get ready! Our KAND Family & Scientific Engagement Conference will be hosted virtually this year on Saturday, August 13th, 2022. We have many opportunities available to hear updates from our partners and collaborators as well as connect with the family, scientific, and clinical communities! A complete agenda and more information about registering for the event will come soon.


Community Highlights

Raising Funds for KIF1A Research!

Happening Now! Terra Foundation Silent Auction and Raffle

Our friends at the Terra Foundation has launched their Super Kids Festival Silent Auction and Raffle! Proceeds benefit KIF1A.ORG, so please extend the invitation to this event with your friends, colleagues, and family! If you’re looking for a getaway or tickets to the Super Bowl, you’ll want to check this out!

The silent auction and raffle will close June 11th at 5:00 pm MST. Winners will be contacted June 12th. You can check out what’s in store by clicking the button below or by texting “superkidsfest” to 76278 (mobile carrier messaging rates may apply).

As always, the KIF1A community has been on the move with grassroots fundraising efforts. Below are a few highlights of our family community in action!!

#ImWithBeau Fundraiser for KIF1A.ORG

With the help of a local police station and creative planning skills, Beau’s family and friends raised over $6,000 USD to change the fate of KAND! Thank you for impacting KIF1A.ORG‘s mission with extra fun through costumes and entertainment!

Hazen’s KIF1A Summer Lemonade & Cookie Stand

KIF1A Superhero Turner’s friend Hazen has made a selfless commitment to Turner and the rest of our KIF1A community. This summer he will be running his own lemonade and cookie stand to raise funds for the discovery of life-changing treatments. His first weekend was a success, and he was able to donate $116 USD so far towards KIF1A.ORG’s mission!

Incredible Ethan’s Family Fun Day and Softball League Challenge

Incredible Ethan’s Family Fun Day and Softball League Challenge event raised over $7,850 USD for KIF1A research! Thank you to all of Ethan’s family, friends, and community for planning such a FUN day in honor of Ethan and our mission!

In Case Your Missed It

We’ve had a lot of announcements over the last couple months! Here are a few important reminders as we head into June!

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.

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. Since KIF1A Day, more monthly donors have joined as League of Sidekicks. Will you also join us in offering a brighter future for those affected by 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 impact@kif1a.org.

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!


Research Highlights

Look Who Heard Us!

We used our voices, and look who heard us! In March, KIF1A.ORG joined other rare disease patients and advocates to record a reading of FDA’s “Patient-Focused Drug Development: Methods to Identify What Is Important to Patients.” Thanks to every patient/caregiver who made this Patient-Focused Drug Development video possible and thank you to U.S. Food and Drug Administration for amplifying patient voices! PFDD guidance is more than a recommended checklist or optional reading. It turns “patient-focused” & “patient-centered” buzzwords into actions all stakeholders can take to improve the drug development process and patient outcomes. This is how everyone wins.


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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