Dear KAND Community,
This February, in honor of Rare Disease Day on 2/28, we have two important initiatives underway! Please read below to learn about our ASCEND survey completion challenge and our Miles That Matter for KIF1A campaign. These initiatives are critical to our community—driving research participation and raising awareness and funds to advance our mission.
Other topics of interest this month include:
- 1st Quarter Community Call
- Dylan Verden’s Office Hours
- Registering for our KAND conference
- Volunterring on the conferece committee
- & Fundraising
Join us this month in celebrating our incredible patients and their journeys by taking action and getting involved!
With hope,
Angie Fuller
Director
ASCEND Survey Completion Challenge
We’re thrilled to announce that we’ve reached our 2024 year-end goal of enrolling 200 KIF1A patients in the ASCEND online natural history study! 🎉 A huge thank you to everyone who recognized the urgency of this study and took the time to enroll.
But signing up is just the first step—now it’s time to finish what we started by completing all the surveys and Vineland assessments.
On January 31st, Chung Lab will email all ASCEND participants, past and present, in an attempt to increase our survey completion numbers through the month of February, and re-enroll past participants that have become inactive.
Our participation numbers look like this:
- 71 past ASCEND participants from Columbia University will be invited to re-enroll at Boston Children’s Hospital ✨
- 100 participants will be sent their annual “follow-up” surveys 📅
- 76 participants will need to complete their initial battery of surveys and Vineland assessment 🖥️
- 24 participants will not need to complete anything because they have completed all their surveys within the past 6 months ✅
If you’re among these participants, your engagement and survey completion during the MONTH OF FEBRUARY is essential in advancing research and bringing us closer to breakthroughs for the KAND community. With such a rare community, every patient and every piece of data matters!
Let’s make every patient and data point count this February! 💙❤️
If you are among the 279 patients in our community who have never enrolled in ASCEND, or if you have questions about engaging with ASCEND….
Please watch our 12 min video to gain a better understanding of why ASCEND is so critical to our community. We’ll also review our participation numbers in greater detail and get an inside look at the emails and survey links sent from Boston Children’s Hospital. After watching this video from Dr. Verden and Angie Fuller, you’ll know all the key details and will be up to speed on everything ASCEND-related.
Miles that Matter for KIF1A Challenge: Rare Disease Month!
We have over 500 participates for our first ever virtual Miles that Matter for KIF1A campaign starting February 1, and culminating on Feb 28th, Rare Disease Day!
We begin this weekend, and you can start logging your miles under your RunSignUp account. Remember you have 28 days to complete 28 miles. You can participate from anywhere in the world, and complete those miles however you chose. Whether you like to run, walk, stroll, bike, be carried, crawl, swim… any type of movement is welcome and celebrated!
Because KAND robs many of our patients of their ability to walk, WE DON’T TAKE A SINGLE STEP FOR GRANTED! Join our challenge, stay healthy, and support our patients and their families this February in celebration of Rare Disease Day, February 28th!
2025 KAND Family & Scientific Engagement Conference
KOALA Participation
The KOALA Study (KIF1A Outcome measures, Assessments, Longitudinal And endpoints Study) is led by Principal Investigator, Dr. Wendy Chung, and a team of specialists at Boston Children’s Hospital who perform standardized assessments with KAND patients to understand how KAND symptoms develop and change over time.
****If you can’t attend the KOALA study at the conference, no worries! The Chung Lab accommodates 3–4 KIF1A patients for KOALA each month, typically on the first Thursday and Friday. To schedule a session outside of the conference, click the button below or email ASCENDstudy@childrens.harvard.edu with the subject line: KOALA Study. Let them know you’re interested in participating outside of the conference dates and provide a few dates that work for your family. This will help initiate the conversation, and the team will follow up shortly to coordinate with you.
Dr. Dylan’s Office Hours
Office hours are listed above and on our website under the “Get Involved” tab, in the UPCOMING EVENTS section. Bring your questions, comments, and concerns—he’ll be ready to provide answers, offer insights, take notes, and listen to our community feedback.
Your participation and experiences play a crucial role in shaping the information shared with researchers worldwide. It’s an easy but powerful way to drive patient-centered research and improve outcomes!
1st Quarter Community Call
We’re excited to kick off 2025 with our first Community Call, where we’ll review all the amazing projects and events we have planned for the year.
To accommodate families both in the US and internationally, we’re offering two different times on two separate days. Please check out the days and times in the events section below and register! We can’t wait to connect with you.
WE NEED YOU.
We are planning our 2025 conference and would appreciate some conference committee members from our KIF1A families! If you are planning to attend and can dedicate some time to support our efforts, please email Angie@kif1a.org. Thanks in advance for rolling up your sleeves and helping our community.
Last but not least…. FUNDING
With our next KAND Conference set for July 2025, we’re excited to kick off fundraising efforts to bring this invaluable event to life. Hosting a conference is costly, and we need the support of our community to make it happen.
Consider dedicating your birthday to KIF1A.ORG by starting a fundraiser on Facebook or GoFundMe. You could also dedicate your next 5K, half marathon, or marathon to raising funds.
There are countless simple and fun ways to get involved, and we need every family to contribute in any way they can. Every dollar counts, and with everyone’s participation, we can drive our collective mission forward and accelerate research toward a cure.
Thank you!
As always, we extend our heartfelt gratitude for staying informed and engaged with KIF1A.ORG. Your ongoing participation and commitment to our mission are truly invaluable, and the impact you have on advancing our collective goals cannot be overstated. Together, we are making a profound difference in the lives of those affected by KIF1A-related disorders. Thank you for your continued support, dedication, and partnership in this journey!