Updates from KIF1A.ORG
While summer may be winding down in the Northern hemisphere, we are revving up to finish out 2025. Read on below to learn more about:
- A new virtual U.S. based advocacy opportunity in October
- Requests for medical records for the KIF1A ASCEND Study
- A community favorite fundraiser that is BACK for 2026
- Honoring the life of Livia, a late KAND warrior
KIF1A Virtual Hill Day – Advocacy Opportunity for KIF1A Community!
We are seeking US-based volunteers interested in participating in a virtual “KIF1A hill day” during the week of October 20-24. This is an advocacy participation opportunity where we will connect KIF1A families and advocates with their local legislative offices. Here, we will meet with members of Congress and their staff to advocate for KIF1A specific policy issues, such as the MINI Act and the Accelerating Kids Timely Access to Care process.
We will have a prep meeting in advance of our “KIF1A hill day” to help inform you all on how the process will work, which talking points we’d like to bring up, and to help you craft your message. This is a great opportunity to dip your toes into the world of policy and advocacy by making your stories heard!
If you are interested in participating, please contact impact@kif1a.org.
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!
Save The Date – Miles That Matter is BACK in 2026!
Will You Join Us for Miles That Matter for KIF1A?
BACK BY POPULAR DEMAND! This February, we’re challenging ourselves—and each other—to again complete 28 miles (or more!) by February 28, 2026, in honor of Rare Disease Day!
KIF1A Associated Neurological Disorder (KAND) can prevent some of our children from ever being able to move, and those who can face the possibility of losing that ability over time. It’s one of the many devastating symptoms of KAND, which is why…
WE DON’T TAKE A SINGLE STEP FOR GRANTED.
As parents, caregivers, and advocates, it’s vital that we stay strong. This Rare Disease Month, we’re on a mission to honor our KAND warriors by raising awareness and supporting critical research to find effective treatments and, one day, a cure.
You can complete your miles however you choose—walking, running, cycling, or any way that feels right for you. Every mile matters, and it’s all about moving forward. We hope to inspire everyone to join us in this journey!
More information on how to register and participate coming soon. In the meantime, save the date!
WANT TO HELP? We are looking for a volunteer to manage sponsorship relations for this event. If you are interested in learning more about this opportunity, please email impact@kif1a.org.
We Remember Livia
It is with profound sadness that we share the news of the passing of another brave KAND warrior, Livia, from Brazil. At just two years old, Livia’s life was deeply impacted by KIF1A Associated Neurological Disorder, a disease that stole both her childhood and her future. Livia had the KIF1A variant, E253K. Our hearts are with her loving parents, Camila and Renato, as we grieve alongside them and honor Livia’s memory. Please use the link below to view our page honoring Livia’s memory.
May you rest in peace, sweet Livia, free from the weight of KAND and its limitations.
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
