Updates from KIF1A.ORG
July was an unforgettable month for the KIF1A.ORG community! We had an incredible time connecting, learning, and growing together at the 2025 KAND Family & Scientific Engagement Conference. Thank you to every family, researcher, clinician, and supporter who made this event such a success.
If you couldn’t join us—or if you just want to relive the experience—we’ve got you covered!
- Conference Webpage: Explore all the presentations and downloadable slides here.
- Conference Videos: From in-depth sessions to special moments, you can watch everything on our YouTube channel and Conference Playlist.
- Highlight Video: Don’t miss this short recap that captures the energy and inspiration of our time together. Watch now.
Help Advance Research: Medical Record Collection with Dr. Wendy Chung & The ASCEND Team
As part of the ASCEND study, Dr. Wendy Chung and her team need your help to collect medical records for individuals with KIF1A.
The information you’ve shared through surveys and KOALA assessments has been incredibly valuable, but collecting medical records will help fill in important gaps and give researchers a more complete picture of KAND over time.
If you’ve already submitted records—thank you! If you’ve only sent some records or haven’t yet contributed, we encourage you to send as much as possible by October 31, 2025.
What to Send:
- EEG reports and disks
- Brain MRI reports and disks
- Developmental assessments (e.g., neuropsychological testing, developmental scores, developmental medicine notes)
- Neurology notes (especially related to seizures or movement management)
- Ophthalmology notes
- Retinal imaging reports or images
- Gait lab results
- Other specialist visit notes
(No need to send general medical records like vaccination history or routine visits.)
How to Send:
- Email: ASCENDstudy@childrens.harvard.edu
- Fax: 617-730-6981 (ATTN: ASCEND Study)
- Mail:
Dr. Wendy Chung
ATTN: ASCEND Study
Boston Children’s Hospital
4 Blackfan Street
HIM, 9th Floor, Room 907
Boston, MA 02115
If you need help requesting records or providing authorization forms, please reach out! The ASCEND team is happy to assist and answer any questions about what’s needed or what’s already on file.
Your participation is critical in helping researchers understand KAND and accelerate progress. Thank you for your continued support!
Upcoming Community Call: Thursday, August 28 at 12:30 PM ET
Our next community call is all about keeping the momentum going after the conference. During this session, we’ll:
✔ Discuss key conference takeaways
✔ Share opportunities for YOU to get involved
✔ Answer your questions and have an open conversation with Dom and Dylan
Register for the call here → [Link]
Volunteer with Us!
KIF1A.ORG is powered by the strength and talents of our community. We’re looking for volunteers to help us make an even bigger impact! Current opportunities include:
- Fundraising Committee
- Newly Diagnosed Ambassadors
- Policy & Advocacy Team
- Other Talents and Skills: If you have expertise in another area and want to contribute, we’d love to hear from you!
If you’re interested, email us at impact@kif1a.org.
Thank you for being a part of this incredible community. Together, we’re building hope, accelerating research, and supporting every family affected by KIF1A Associated Neurological Disorder (KAND).
Stay connected, stay empowered, and we’ll see you on August 28!
