February 28th is Rare disease Day, and this year we are celebrating with two important initiatives!
1. Miles that Matter for KIF1A Challenge:
Join us starting Feb 1-Feb 28 in our first ever virtual walk! You can participate from anywhere in the world and complete 28 miles, in the 28 days of February, culminating on Rare Disease Day – February 28th! Because KAND robs many of our patients of their ability to walk, We Don’t Take a Single Step for Granted! and we are honoring our patients with this challenge. You can complete your challenge with any movement you prefer! Run, walk, stroll, carry, wheel, crawl, swim… it’s up to you! All proceeds benefit KIF1A.ORG.
2. Show your LOVE for a KAND CURE!
Because February is also Valentine’s Day ❤️, we encourage everyone with a KIF1A mutation to help our community’s research efforts by enrolling in ASCEND!
For the 200 patients already enrolled, please complete your annual survey updates by February 14th, in honor of our patients this Valentine’s Day! Your survey link will be emailed to you Feb 1. If you have any questions, email ASCENDstudy@childrens.harvard.edu.
Will You Join Us for Miles That Matter for KIF1A? This February, we’re challenging ourselves—and each other—to complete 28 miles (or more!) by February 28,…
Saturday, February 1, 2025 – Friday, February 28, 2025 Participate from anywhere in the world!Families, do you have questions about KIF1A.ORG or KAND? Join KIF1A.ORG’s chief science officer Dylan Verden during office hours for an open discussion of all…
Friday, February 21, 2025 9:00 am – 10:00 am https://us06web.zoom.us/j/89747414497These 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,…
Wednesday, February 26, 2025 1:00 pm – 2:30 pm Online via Zoom
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…
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Hi KIF1A Families, Sloane received her forth ASO dose in October at 80mg. This dosing consisted of pre-dose bloodwork, research EEG, PT evaluation, and a cognitive evaluation. The biggest changes we have seen so far have been in her speech and cognitive awareness. She recently started counting to 10 on her own! We are noticing slightly…
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