Happy October from the KIF1A.ORG team! Thank you all for reading about what we’ve been up to this month, including:
- KIF1A.ORG Virtual Hill Week: Back for 2026, December 7-11!
- Q4 Community Call: Register Now for Our Session with Dr. Wendy Chung
- Community Spotlight: Meet the Mom Behind Cure for Emmery
- New Website Resource: Urinary and Bladder Symptoms in KAND
- Double Your Impact: Employer Gift Matching
- Upcoming Events, Question of the Month, and more!
KIF1A.ORG Community Question of the Month
Thank you to all who participated in last month’s question “What would you like to see discussed at an upcoming KIF1A.ORG Community Call?”. We learned that, while our readers have a range of interests, the two most popular requests were: aging and progressive need with KIF1A and a current research update. Thank you all for your input, which helps us tailor our focus for future community touch points and resources.
In our newsletter this month, we highlight our new “Urinary and Bladder Symptoms in KAND” resource on our website. This resource has been met with much positive feedback! For our October Question of the Month, we are requesting your help selecting our next symptom resource page for our website. Your voice helps us better understand and support the community we’re a part of. Just click, answer, and you’re done.
KIF1A.ORG Question of the Month – October 2026
KIF1A.ORG Hill Week is BACK in 2026!
By popular demand, KIF1A.ORG Virtual Hill Week is back! After a successful first year in 2025, we’re bringing this advocacy opportunity back for 2026. We’ll connect KIF1A families with their local legislative offices to meet virtually with members of Congress and their staff and advocate for KIF1A-specific policy issues. A prep meeting beforehand led by KIF1A.ORG staff and volunteer policy experts will walk you through how the process works, the talking points we’ll cover, and how to craft your message.
This is a great way to dip your toes into policy and advocacy by making your story heard. If you’re a US-based family interested in participating, email impact@kif1a.org with your zip code or fill out the form below. Once we’ve identified an interested group, we’ll reach out with next steps.
2026 Hill Week Interest Form
Reminder: Register NOW for Our Q4 Community Call with Dr. Wendy Chung
Join us for KIF1A.ORG’s Q4 Community Call on Wednesday, November 18 at 2:00 PM ET. During this one-hour session, Dr. Wendy Chung and her team from Boston Children’s Hospital will share their presentation titled “Expansion of Care and Research for KIF1A Associated Neurological Disorder”. In this presentation, we will learn more about research updates, upcoming opportunities, and new developments. We hope you’ll join us to learn, ask questions, and connect with the community.
Community Spotlight: Meet the Mom Behind Cure for Emmery
Since her daughter Emmery’s 2022 diagnosis, Valerie Morris has turned her love for her little girl into action, raising more than $225,000 for KIF1A.ORG through community fundraisers. In our latest Community Spotlight, Valerie shares what inspires her, how she gets her community involved, and her advice for anyone thinking about hosting an event: “You can’t be told yes unless you ask.”
Valerie is also the force behind the Bid for a Cure Annual Emmery Morris Silent Auction on November 5 in Huntsville, AL, with all proceeds supporting KIF1A.ORG. You can help make the night a success by donating from the remaining raffle item wishlist. Items are welcome through November 4.
New Resource on KIF1A.ORG Website: Urinary and Bladder Symptoms in KAND
Bladder symptoms are often discussed in our community, but clear answers can be hard to find. This new resource explains how KIF1A and KAND can affect bladder function, including neurogenic bladder, UTIs, and urinary retention. It also includes tips for talking with your urologist or nephrologist.
Thank you to Rebekah Kim, M.A., a KIF1A community volunteer and biotechnology graduate student, for writing this resource! 👏
Double Your KIF1A Community Impact with Employer Gift Matching
Did you know your employer could double your gift to KIF1A.ORG? 
Many companies match employee donations, so a $500 gift could become $1,000 for KIF1A families and research. It costs you nothing extra!
Check with HR or your employee benefits portal to see if your employer offers gift matching. It only takes a few minutes, and it doubles your impact.
Upcoming Events
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Nov 12
Newly Diagnosed Meetup
These gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…
Thursday, November 12, 2026 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom -
Nov 17
Adults with KIF1A November Meeting: Barriers to Care and Services
This gathering is an opportunity for adults with KIF1A to connect with one another and discuss experiences with infection, illness, and how they intersect with…
Tuesday, November 17, 2026 2:00 pm – 3:00 pm https://us06web.zoom.us/meeting/register/FhTb71TnTfmfWW5sQWapwg#/registration -
Nov 18
4th Quarter Community Call, KIF1A.ORG – Dr. Wendy Chung and Boston Children’s Hosptal
Join us for KIF1A.ORG’s Q4 Community Call on Wednesday, November 18 at 2:00 PM ET. During this one-hour session, Dr. Wendy Chung and her team…
Wednesday, November 18, 2026 2:00 pm – 3:00 pm Eastern Time Zone
Online via Zoom -
Dec 7 – 11
KIF1A.ORG On The Hill! Virtual Hill Week 2026
By popular demand, KIF1A.ORG Virtual Hill Week is back! After a successful first year in 2025, we’re bringing this advocacy opportunity back for 2026. We’ll…
Monday, December 7, 2026 – Friday, December 11, 2026 Virtual
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
