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:

• 
  August Monthly MomentumAugust 27, 2026
  Happy August from the KIF1A.ORG team! Thank you all for reading about what we’ve been up to this month, including: Introducing: KIF1A.ORG Community Question of the Month! This month marks the launch of KIF1A.ORG Question of the Month and we want to hear from you! Your voice helps us better understand and support the community…
• 
  July Monthly MomentumJuly 31, 2026
  Happy July from the KIF1A.ORG team! Thank you all for reading about what we’ve been up to this month, including: 📅 SAVE THE DATE: 2027 KIF1A Family and Scientific Engagement Conference We’re heading back to Boston for the 2027 KIF1A Family & Scientific Engagement Conference, taking place July 22–24, 2027, at the Sheraton Boston Hotel! Join…
• 
  MCRI 2026 KAND Impact and Involvement ReportJuly 24, 2026
  KAND researchers at the Murdoch Children’s Research Institute, led by Dr. Simranpreet Kaur, have taken a commitment to patient-centered research to heart. See how in their most recent impact update.
• 
  June Monthly MomentumJune 29, 2026
  Happy June from KIF1A.ORG! Thank you all for reading about what we’ve been up to this month, including: 💛 Gia’s Closet 💛 Established At Boston Children’s Hospital for KIF1A Families We are incredibly proud to announce and support the launch of Gia’s Closet at Boston Children’s Hospital. Gia’s Closet will be a dedicated space filled…
• 
  Remembering Gia Grace: Gia’s Closet Established At Boston Children’s Hospital for KIF1A FamiliesJune 24, 2026
  Boston Children’s Hospital – a top leader in pediatric care across the globe – will soon be launching the first-ever KIF1A NEXTGen Clinic, a groundbreaking center of excellence model program dedicated entirely to the clinical care of patients with KIF1A mutations. This clinic will bring together a specialized, multidisciplinary team of providers at BCH 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