Happy August from the KIF1A.ORG team! Thank you all for reading about what we’ve been up to this month, including:
- New Series: KIF1A.ORG Question of the Month
- KIF1A.ORG Mini Grants: Now Receiving Applications
- Engineering KIF1A: A Car for Beau
- Swing For The Cure: It’s BACK, This September
- Community Reminders, Resources, Opportunities, and MORE!
Introducing: KIF1A.ORG Community Question of the Month!
This month marks the launch of KIF1A.ORG Question of the Month and we want to hear from you! 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
KIF1A.ORG 2026 Mini Grant – Now Receiving Applications!
KIF1A.ORG has opened applications for our 2026 Mini Grant Initiative, offering $30,000 in total funding to accelerate patient-centered research into KIF1A Associated Neurological Disorder.
Individual researchers can apply for up to $10,000 to support projects that improve patient representation in the scientific literature or address KAND symptoms with high impact on quality of life.
We welcome applications from academic and clinical institutions, non-profits, and biotechnology companies, both within and outside the United States, and strongly encourage early and mid-career researchers to apply.
Awardees will have their work featured on our website and be invited to present at our 2027 KAND Family and Scientific Conference.
📅 Application deadline: September 20th at 8pm Eastern
Meet Beau… and meet “Beau Car”! 🚗 👋
When 6-year-old Beau’s mom couldn’t find a toy car built for his needs, she turned to Fresno State Lyles College of Engineering. Here, three students spent weeks designing, 3D-printing, and building a fully custom ride for Beau complete with a push handle, supportive footrest, and personalized steering wheel. And in in Beau’s favorite color, of course!
“We cannot just buy certain toys and give him certain experiences, so we have to create them,” said his mom, Katie. Undeterred, these students rose to the challenge.
This is what happens when engineering meets empathy, and when community shows up for a family navigating the challenges that coexist in life with KIF1A.
Thank you to everyone at Fresno State who helped make this dream real for Beau ❤️.
August Virtual Community Meeting Recordings Now Available for Viewing
🫶 Thank you to all who joined our virtual community touch points this month!
We’ve had a busy month of community connection, utilizing virtual platforms to connect our global community around key topics of interest. This month we held:
- Our 3rd Quarter of 2026 Community Call: This this one-hour call featured a guided panel discussion on the topic of KIF1A, behavior, mood, and emotion.
- Our Monthly Adults with KIF1A Meeting: This one-hour call facilitated a group discussion on the topic of how adults with KIF1A experience, and manage, peripheral neuropathy, temperature regulation, and other neurological symptoms.
🎥 If you weren’t able to join us, have no fear. Our 3rd Quarter of 2026 Community Call and our Adults with KIF1A Monthly Meeting recordings are available on our Private Family Resource page for viewing. If you don’t have access to this page, please email impact@kif1a.org.
Welcome New Members! A Reminder to Fill Out Newly Diagnosed Form
Our patient community is rapidly growing and we are meeting a lot of new faces!
If you’re new here, welcome. We’re so glad you found us. Whether you just received a diagnosis or you’re still early in your journey with KIF1A, this community is here to support you every step of the way. If you haven’t yet filled out our Newly Diagnosed form, please take a few minutes to do so (no need if you’ve already completed it in the past). This form helps us connect you with the right resources, research updates, and fellow individuals who understand exactly what you’re going through.
Filling out the form also helps our team better understand the needs of our growing community, so we can keep improving the support we offer. Thank you for being here!
We Need You: Volunteer Opportunities Have Been Updated!
Want to put your skills to work for the KIF1A community? We’ve just refreshed our volunteer opportunities page, and there’s something for everyone: whether you have a few hours a month or want to dive into a bigger project. Current openings include roles like Administrative and Operations Volunteer, Social Media Volunteer, Support Group Coordinator, and committee positions for our 2027 Conference and Miles that Matter fundraiser. We’re also looking for Focus Group Participants to share their perspectives on topics like caregiver support and community mentorship.
No matter your skillset or time availability, there’s a way to get involved. Check out the full list of opportunities and find using the link below. Have questions, ideas, or want to get involved? Send us an email at impact@kif1a.org.
Swing For The Cure Is BACK This September!
Join us at Sunset Landing in Huntsville, AL for the Annual Emmery Morris Golf Tournament benefiting KIF1A.ORG!
💙 SPONSORS WANTED
Help us Swing for the Cure while getting your business in front of golfers and our community.
Sponsorships: $500 | $1,000 | $2,500 | $4,000
Benefits include logo placement, hole signage, tournament recognition, social media exposure and more.
📅 Sponsor deadline: September 1
📧 cureforemmery@gmail.com
📞 256-509-4706
🌐 https://www.cureforemmery.com/shop
WANT TO HELP EVEN IF YOU CAN’T PLAY?
We’ve created an Amazon Wishlist with items needed to help make the tournament a success. Every purchase, big or small, helps us create a great experience for everyone who comes out to Swing for the Cure!
Thank you for your help! Together, we’re raising funds, raising awareness, and raising hope for KIF1A.
Upcoming Events
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Sep 22
Adults with KIF1A – September Meeting
Join KIF1A.ORG and other KIF1A adults to discuss how your experience with, and management of, KIF1A symptoms.
Tuesday, September 22, 2026 1:00 pm – 2:00 pm https://us06web.zoom.us/meeting/register/FhTb71TnTfmfWW5sQWapwg -
Oct 15
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, October 15, 2026 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
