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Hello Friends

Registration for the virtual 2022 KAND Family & Scientific Engagement Conference is now open! We invite you to join in on the excitement by ordering your conference t-shirt and exploring this month’s highlights to learn about the conference agenda and how to register, as well as other important reminders. 

Register Now: KAND Conference on August 13, 2022

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! Registration is officially OPEN! Click the button below to register for the event and preview the agenda. Can’t wait to see you there!

Community Highlights

Dr. Dom is Back in the Office!

Our Chief Science Officer Dr. Dominique Lessard is back from parental leave with the additional new title of Dr. Mom! Dr. Dom is eager to dive back in and pick up where she left off with Research Network members, families, and other members of our community. Want to get contact with Dr. Dom? Send her an email at dvlessard@kif1a.org. If you haven’t had a chance to get to know Dr. Dom, you can do so by reading her updated Q&A below!

Families: Check Your Email for Vineland Questionnaire

If it’s time to complete an updated Vineland Questionnaire for your superhero who is currently enrolled in the Natural History Study, the team at Chung Lab is trying to reach you! Please check your email for any correspondence from Chung Lab at kif1a_study@cumc.columbia.edu.

Fundraising Highlights

Super Kids Festival 2022

We thank each and every friend involved in planning the Terra Foundation’s fundraiser to find treatments for KAND and other rare childhood disorders! You are all rock stars!

KIF1A in the News

KIF1A Superhero Turner received a new device called a Trexo robotic walking device, and he demonstrated the use of this device during a special event, “Turner Walks,” this month on the Grand Avenue pedestrian bridge in Colorado! Read more about this huge life-changing opportunity for Turner and the event here.

In Case Your Missed It

We’ve had a lot of announcements over the last couple months! If you’re new to the community or need to catch up on all things KIF1A, we’re here to help.

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 showing 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

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!


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 impact@kif1a.org to suggest articles or content!

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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