2023 KAND Family & Scientific Engagement Conference

KIF1A.ORG is excited to host the next KAND Family & Scientific Engagement Conference in New York at the TWA Hotel at the JFK Airport on August 3-6, 2023!


The KAND Conference will bring together patients, family members, researchers, clinicians, treatment developers, and friends of the KIF1A.ORG community. Our Keynote Speaker, Dr. Wendy Chung, will kick off the conference Saturday morning of August 5th by sharing updates on her amazing work with the Natural History and KOALA studies. Then we will move into clinical conversations, therapeutic discussions, and scientific updates for the duration of the conference.

Please note that the first half of our conference dates are reserved for KOALA study participation. This will be held August 3-5th for any KAND patient that wants to enroll.

We can’t wait to see you in August and if you have any questions, please email Angie Fuller, Director at KIF1A.ORG, at Angie@kif1a.org.

  • Aug 3 – 6

    2023 KAND Conference

    KIF1A.ORG is excited to host the next KAND Family & Scientific Engagement Conference in New York at the TWA Hotel at the JFK Airport on…

    Thursday, August 3, 2023 – Sunday, August 6, 2023 The TWA Hotel at New York’s JFK Airport
    John F. Kennedy International Airport, One, JFK Access Road, Idlewild Dr
    Queens, New York, USA

Registration

Please use this registration survey form for in-person and virtual attendance. The form also gives you the option to reserve hotel rooms and express your interest in the KOALA Study. Families should fill out one registration form per family, while researchers should fill out one registration form per attendee. If you need to make changes, please email impact@kif1a.org to update your information.

Agenda

**KAND patients participating in the KOALA study will have medical assessments throughout the days starting Thursday, August 3rd – Saturday August 5th.

Friday, August 4:

– Welcome Reception & Dinner

Saturday, August 5, 9am-5pm:

– Opening Address: Luke Rosen, Founder KIF1A.ORG

– Keynote Speaker: Dr. Wendy Chung MD, Clinical and Molecular Geneticist

– Small Molecule Drug Screening

– RNA- and Gene-Based Therapies

– Clinical Conversations with families and clinicians

– Therapeutic Pipeline Updates

Sunday, August 6, 9am-5pm:

– KIF1A Molecular Mechanisms

– Preclinical Models for KAND

– Clinical Conversations

– Closing Remarks

* Agenda subject to change.

Hotel Rooms

KIF1A.ORG has a block of hotel rooms for our families to reserve for a discounted rate of $199/night USD. This special rate is available for 5 nights from August 2nd – 6th, 2023.

The TWA Hotel is located in Terminal 5 at the JFK airport.

Check out this link for directions to the hotel.

KOALA Study Participation

KIF1A.ORG has partnered with Columbia University to bring the KOALA study to the 2023 KAND Conference so we can get as many warriors enrolled in the study as possible! All KOALA study travel is self-funded at this time. We encourage families to host personal fundraisers if possible, to help off-set the travel costs associated with your warrior’s participation. For more details about fundraising, please go to our website, and check out the Fundraising page under the Get Involved section.