June Monthly Momentum

Dear KIF1A.ORG Community,

As the middle of the year rolls in, we’re filled with excitement and anticipation for our upcoming KAND Family & Scientific Engagement Conference happening July 25–26, 2025 in Boston, Massachusetts! This event is one of our most important opportunities to bring together patients, families, researchers, clinicians, and advocates—all united in our mission to discover treatments and a cure for KAND.

Whether you’re joining us in person or virtually, this year’s event is packed with meaningful content, community connection, and scientific progress!!

With hope,

KIF1A.ORG Team

Still undecided if you should attend the conference?!

Hopefully this section convinces you of all the great people, content, and experience you will have if you participate in-person or online!

🗓️ Conference Details & Updates

Agenda

🙋‍♂️In-person Registration ***2 day extension***

Feeling regret that you didn’t register to attend the conference? You are in luck. *We are extending registration for 2 more days! In-person registration closes after June 23rd.

💻 Virtual Registration Is Still Open!
Don’t miss your chance to join us online! Participate in real time, ask questions, and engage with our speakers and community from anywhere in the world.

🏨 Hotel Booking: ***2 day extension***
We’ve secured discounted hotel rooms at the Wyndham Boston Beacon Hill. Book using our conference link here.

If the link shows no availability or your preferred room type (King or Two Queens) isn’t listed, please email our hotel contact, Nicole, at ncaraglia@pyramidglobal.com with your desired dates and room preference.

We’ve received a short extension on our hotel room block and are allowing reservations until Monday, June 23. After that, our discounted rate is no longer available.

🧬 What to Expect: Speakers & Research Highlights

Our conference will feature some of the brightest minds and most dedicated advocates in KIF1A research. To read more about our speakers listed below, check out our conference website’s speaker section to read their bios and areas for focus.

• Natural History Study Update: Dr. Wendy Chung will present updates from our Natural History Study and take live questions from our community.
• SpineX Pilot Trial Results: We’re thrilled to announce that two KAND patients completing an 8-week SpineX trial will have their progress and results shared during Friday afternoon’s session.
• n-Lorem and ASO Therapies: Laury Mignon from n-Lorem will discuss their approach to ASO therapies and “n-of-1” treatment development. You’ll also hear directly from families currently receiving or preparing to receive ASO therapy.
• KAND Vision & Mobility Experts: Learn from specialists helping us understand and manage the unique visual and movement challenges in KAND.
• Digital Data Collection: Patients at the conference will be offered the opportunity to contribute digital data from home that measures their mobility, balance, gait, and other physiological measures like pulse and sleep patterns. This opportunity is in partnership with Biosensics and Chung Lab at BCH. Read our Blog to learn more about our collaborative work with their revolutionary data collection methods.
• First Speech Study in KAND: Researcher Lottie Morrison will share findings from the first-ever KAND speech study, conducted in 2024.
• Drug Discovery & Gene Therapy in Australia: Dr. Simran Kaur will provide updates on her team’s promising work in drug screening, mini gene therapy, and future research goals.
• Genetic Diversity in KAND: Jayne Aiken will present on KAND heterogeneity and how genetic variability affects diagnosis and treatment strategies.
• JAX Lab & Mouse Model Updates: Hear from Markus Terry on the ongoing progress with our KAND mouse models.

🌍 Access & Inclusion

Our conference will include live translation to ensure accessibility for all families in person and online. We will also be using a conference app to submit questions, participate in polls, and stay connected in real time. More details will be sent to registered attendees before the conference.

Upcoming Events and Meetings

Recent Blog posts:

• 
  Genetic Testing Action Day – July 25thJuly 20, 2025
  Join the Movement: Genetic Testing Action Day—July 25, 2025 Empowering Families to Start Genetic Join us for the inaugural Genetic Testing Action Day on July 25! In collaboration with CureSHANK and other rare disease organizations, we’re proud to support Start Genetic—a national movement dedicated to raising awareness about the critical role of genetic testing in…
• 2025 KAND Conference: Nearby eateries, stores, entertainment, and public transitJuly 15, 2025
• 2025 KAND Conference AgendaJuly 14, 2025
  Please note the following updates to the agenda: Thanks for your flexibility as we make these necessary adjustments!
• 
  June Monthly MomentumJune 22, 2025
  Dear KIF1A.ORG Community, As the middle of the year rolls in, we’re filled with excitement and anticipation for our upcoming KAND Family & Scientific Engagement Conference happening July 25–26, 2025 in Boston, Massachusetts! This event is one of our most important opportunities to bring together patients, families, researchers, clinicians, and advocates—all united in our mission…
• 
  BioSensics Joins KIF1A.ORG’s Mission to Support KAND Natural History StudyJune 20, 2025
  Wearable Digital Data Collection Is On the Horizon: Meet BioSensics KIF1A.ORG is thrilled to announce an exciting new initiative to enhance our natural history study and accelerate progress toward clinical trials: wearable digital data collection in partnership with BioSensics, a leading innovator in digital health monitoring for rare diseases. As part of our efforts to…

💚 Thank You

This community inspires us every day. Your courage, advocacy, and commitment fuel progress. We can’t wait to see so many of you—both in Boston and online—this July.

With hope and determination,
The KIF1A.ORG Team