KIF1A.ORG Newsletter – May 2025
Dear KIF1A.ORG Community,
It has been almost four weeks since I started assimilating into the role of KIF1A.ORG’s new Executive Director and, WOW, what a four weeks it has been. From connecting with community members, to learning about our ongoing and upcoming projects, I am filled with excitement about everything happening here at KIF1A.ORG and can’t wait to keep learning more!
For the KIF1A.ORG team of staff and volunteers, this past month has been filled with lots of prep and planning related to our 2025 KAND Family & Scientific Conference. Please make sure to read through this May Monthly Momentum for important updates on KOALA Study prep, conference registration, and other important upcoming dates as we prepare to congregate as a community in person in July! We also celebrate the success of our KIF1A Day Fundraiser – thank you to all for your support and donations which are used to facilitate patient travel for KOALA Study visits this summer in Boston.
I look forward to connecting with you all during out community call on May 14!
With hope,
Dominique Lessard, Executive Director, KIF1A.ORG
KOALA Study Prep: “Know Before You Go” – What to Expect Before the KAND Conference
Calling all KIF1A research participants, caregivers, and anyone interested in learning more! You’re invited to a 1-hour “Know Before You Go” session with Jessica Waxler, Research Coordinator at Boston Children’s Hospital and the Chung Lab.
Jessica is coordinating all KOALA study assessments leading up to the KAND Conference (July 22–24, 2025) and will provide a detailed overview of what to expect, along with time for your questions.
KIF1A.ORG team members will also be on the call to support your planning and answer questions.
Whether you’re already enrolled or just curious about participating in the KOALA study, this session is open to you! A recording will be available upon request if you can’t attend live.
KOALA participation at the Conference: LAST CALL TO REGISTER!
We still have a few spots left to participate in the KOALA study before the KAND Conference—LAST CALL TO REGISTER!
Taking part in KOALA right before the conference is a great way to make the most of your trip to Boston. It’s a chance to contribute to critical research and connect with the KIF1A community, all in one visit.
To Enroll:
Email AscendStudy@Childrens.Harvard.edu with the patient’s name, date of birth, and your expected arrival date in Boston before the conference.
Don’t forget to register for the conference too—link below!
KAND Family & Scientific Conference: Register Now!
Don’t miss the 2025 KAND Family & Scientific Conference—where 40+ families from around the world will join leading researchers, clinicians, and key opinion leaders. This priceless event is your chance to connect, collaborate, and help drive progress for the KIF1A community.
Register today—virtual and in-person options available!
Join us for our next Community Call on May 14th at 1 PM ET!
We invite everyone to tune in to hear from our new Executive Director, Dominique Lessard, and get the latest science updates. Dylan Verden, KIF1A.ORG Chief Science Officer, will share insights on the current SpineX pilot study for KIF1A patients and the use of wearable digital monitors to strengthen research data.
Don’t miss this chance to stay informed and connected!
We can’t wait to connect with you at our upcoming virtual and in-person events! Take a look at what’s coming up.
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Jun 1
KOALA Study Prep: “Know Before You Go” – What to Expect Before the KAND Conference
Calling all KIF1A research participants, caregivers, and anyone interested in learning more! You’re invited to a 1-hour “Know Before You Go” session with Jessica Waxler,…
Sunday, June 1, 2025 3:00 pm – 4:00 pm Eastern Time Zone
Online Via Zoom -
Jun 26
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, June 26, 2025 12:30 pm – 2:00 pm Eastern Time Zone
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
KIF1A Day
A heartfelt thank you to our incredible community for courageously sharing your rare disease stories on KIF1A Day, April 28th, and generously supporting our patients as they travel to Boston this summer. Your voices inspire hope, and your support makes meaningful participation in research and connection possible. We are endlessly grateful for your dedication to the KIF1A community!
📢 ACTION ITEMS Reminder:
- Register for the conference (in-person or virtual attendance available)
- Register to participate in KOALA before the conference (a few spots left!)
- Register for the Community Call May 14th
Thank you for being a part of this extraordinary community. Your support, passion, and participation are what drive this mission forward. We’re in this together—and together, we’re unstoppable.
With hope,
The KIF1A.ORG Team