Dear KIF1A.ORG Community,
This Friday, February 28th, we join the global community in honoring Rare Disease Day—a day dedicated to raising awareness and shining a light on the millions of people affected by rare diseases. Here at KIF1A.ORG, we’ve been gearing up all month, and the momentum is truly inspiring!
Our Miles that Matter for KIF1A Virtual Walk has been an incredible success, bringing together supporters from around the world who’ve walked, ran, and rolled to make a difference. Thanks to your passion and dedication, we’ve shown that even when we’re miles apart, we’re united in our mission to cure KAND.
Meanwhile, our ASCEND Completion Challenge has elevated our scientific footprint to new heights. By accelerating data collection and collaboration, we’re driving critical research forward and paving the way for breakthroughs that bring hope to our community.
This Rare Disease Day, let’s take action. Let’s make our voices heard. Every conversation, social media post, and step taken in our virtual walk raises awareness and demands attention for KAND and all rare diseases. Together, we can inspire change, influence policy, and drive research forward.
Let’s celebrate how far we’ve come and keep pushing for what’s ahead. We’re not just raising awareness; we’re igniting action and paving the way for a brighter future for all KAND patients.
With hope,
Angie Fuller, Director, KIF1A.ORG
TAKE ACTION!!
Rare Disease Day, February 28, 2025
Each year we join our global community of rare disease patients and celebrate our strength in numbers! It’s a day to share your Rare Disease story, raise awareness, and advocate for our patients. This year, that couldn’t be more important with all the policy and funding changes happening that could threaten our collective progress.
Take action by:
- Share your Rare Disease story
- Use these graphics to increase visibility online
- Advocate by signing our letter to the NIH regarding “Indirect Cost” cuts affecting research funding
- Share your colors and #LightUpForRare
- Listen to one of the world’s leading psychotherapists specializing in rare diseases, Dr. Al Freedman, in his weeklong series “Keepin’ it Rare“
Miles that Matter for KIF1A
20,900 miles and counting!
We have almost logged enough miles to stretch all the way around the world! Can we make it to 24,900 miles by Friday?! I think we can!
We’re in the home stretch of our 28 Miles in 28 Days virtual walk challenge in honor of Rare Disease Day and our incredible KIF1A warriors! If you’re ready to move, there’s still time to join in and log your miles before the clock strikes midnight (Eastern Time) on 2/28!
Final Results: Anyone who completes 28 miles and logs them in their RunSignUp account will be entered into a drawing to win one of three $100 Amazon e-gift cards!
A heartfelt thank you to everyone who’s participated and shared a walk with family, friends, neighbors, coworkers, and even old pals. Your steps have made an impact, and your support means the world to our community. This has been an unforgettable event, and together, we’re making every mile matter.
We don’t take a single step for granted!
ASCEND Completion Challenge!!
“We need every patient to stand up and be counted.” – Dr. Wendy Chung
In order to help our community discover all we can about KIF1A and discover treatments and a cure, Dr. Chung needs every single patient with a KIF1A variant to enroll in our online Natural History Study – ASCEND!
Since February 1st, we’ve made good progress to increase our participation and completion rate. So far we’ve gained:
+31 New Participants
+18 Baseline Surveys Completed
+19 Vineland Assessments Completed
+32 Annual Follow-Ups Completed
**However, to make a BIG IMPACT, we need everyone to take part!**
Our goal is to have all participants complete their requested information by February 28th, in honor of Rare Disease Day!
Let’s make every patient and every data point count this February! 🩵❤️🩵❤️🥳
2025 KAND Family & Scientific Engagement Conference~
When: July 25-26, 2025
Where: Wyndham Boston Beacon Hill Hotel, Boston, MA, USA
Registration is now open for both in-person and virtual attendance at this summer’s conference. Don’t miss this incredible opportunity to connect with other KAND families, build lasting friendships, meet leading researchers, and learn about the latest advancements in KAND research.
We’re anticipating an amazing turnout this year, with hopes of having up to 40 patients participating in KOALA before the conference even begins!
This conference is more than just an event—it’s an unforgettable experience. You’ll walk away feeling inspired, empowered with new knowledge, and deeply connected to a community that truly understands the journey. We can’t wait to see you there!
-
Mar 27
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, March 27, 2025 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom -
Apr 24
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, April 24, 2025 12:30 pm – 2:00 pm Easter Time Zone
Online via Zoom -
May 14
2nd Quarter Community Call, KIF1A.ORG
Join us each quarter to dive into current community events, exciting research opportunities, scientific updates, and more! Your participation is essential, and we truly value…
Wednesday, May 14, 2025 1:00 pm – 2:30 pm Eastern Standard Time
Online via Zoom -
Jul 22 – 24
KOALA Study prior to KAND Conference
The KOALA study will be available to an estimated 40 KAND patients in the days leading up to the conference, on July 22, 23, and…
Tuesday, July 22, 2025 – Thursday, July 24, 2025 In-person
Boston, Massachusetts, USA -
Jul 25 – 26
2025 KAND Family & Scientific Engagement Conference
We’re excited to announce the official dates for our 2025 KAND Conference! Mark your calendars for July 25-26, 2025, and plan to join us in…
Friday, July 25, 2025 – Saturday, July 26, 2025 In-person and Virtual -
Aug 28
3rd Quarter Community Call, KIF1A.ORG
Join us each quarter to dive into current community events, exciting research opportunities, scientific updates, and more! Your participation is essential, and we truly value…
Thursday, August 28, 2025 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom -
Nov 13
4th Quarter Community Call, KIF1A.ORG
Join us each quarter to dive into current community events, exciting research opportunities, scientific updates, and more! Your participation is essential, and we truly value…
Thursday, November 13, 2025 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom