Happy September from the KIF1A.ORG team! Thank you all for reading about what we’ve been up to this month, including:
- A New Member of Our Team: Meet Amy!
- Upcoming Events: This Week and Beyond!
- KIF1A Community Media Submissions: We Want to Feature You!
- Upcoming Events, Question of the Month, and more!
KIF1A.ORG Community Question of the Month
Thank you to all who participated in last month’s question “What’s your connection to the KIF1A community?”. We learned that our newsletter audience is primary filled with parents, family members, and patients with KIF1A mutations. Thank you all for reading our newsletter – we’re happy you’re here ❤️
This month, we’d like to learn more about information you want to receive in our virtual, quarterly community calls. Your voice helps us better understand and support the community we’re a part of. Just click, answer, and you’re done.
KIF1A.ORG Question of the Month – September 2026
Welcome Our New KIF1A Adult Ambassador, Amy Pepper!
We’re thrilled to welcome Amy Pepper, as KIF1A.ORG’s first KIF1A Adult Ambassador. This new ambassadorship reflects the growing number of adults in our KIF1A community and our commitment to making sure their voices and needs are heard. Amy will support newly diagnosed adults, facilitate dialogue, and help develop resources and awareness efforts that advocate for the adult population. Read below for more information about Amy’s background and please join us in welcoming her to KIF1A.ORG!
Amy Pepper, RN, BSN MBA, MS CCC-SLP
KIF1A Adult Ambassador - Volunteer Positionimpact@kif1a.orgAmy Pepper is passionate about connecting, educating, and advocating for the Adult KIF1A population. Amy was diagnosed with KIF1A in 2025 after decades of misdiagnoses and connected with KIF1A.ORG early in 2026. Amy is a Registered Nurse, and her professional background is primarily in oncology and palliative care/hospice. She also has her master’s in business administration and currently works in the biotechnology industry for a company who supports oncology, rare diseases, and neurological diseases; all passions of hers.
Amy is committed to supporting newly diagnosed adult patients and our growing adult community. She strives to learn with, share experiences, facilitate dialogue, develop resources, raise awareness and advocate for the adult population. Although a KIF1A Adult Ambassador, Amy is also passionate about opportunities where the adult populations experiences can bring an added voice to support the pediatric community.
Amy understands that each patient’s journey is unique but ultimately hopes that no patient and family will feel alone in their KIF1A journey. Amy aspires to work with KIF1A.ORG to build resources that can improve symptom management/ enhance quality of life and raise awareness with HCPs and the medical community that ideally lead to additional research initiatives. Amy feels honored to contribute to KIF1A.ORG however she is needed with the goal of making a difference for patients and their families.
This Week: International Symposium on KIF1A Disorders!
We’re proud to support the upcoming International Symposium on KIF1A Disorders, taking place October 2–3 in Pisa, Italy, bringing together clinicians, researchers, and members of the KIF1A community to advance understanding of KIF1A-related disorders.
For our international KIF1A community: three presentations in Session 3 will be presented entirely in English, making it possible for English-speaking attendees from around the world to engage with the latest research and clinical perspectives.
Session 3: Therapeutic Approaches for KIF1A-Related Disorders to include…
- “Clinical Development Roadmap and Trial Readiness for ASO Therapy”
- “Caspases As Guardians of KIF1A Homeostasis and Function”
- “Clinical Experience with ASO Therapy”
Can’t make it to Pisa? Virtual attendance is also available, so you can join the symposium from wherever you are.
Pisa, Italy
October 2–3, 2026- In person and virtual attendance options
Register Now for Our Q4 Community Call with Dr. Wendy Chung
Join us for KIF1A.ORG’s Q4 Community Call on Wednesday, November 18 at 2:00 PM ET. During this one-hour session, Dr. Wendy Chung and her team from Boston Children’s Hospital will share research updates, upcoming opportunities, and new developments. We hope you’ll join us to learn, ask questions, and connect with the community.
Your Moments, Our Community: Photos & Videos Wanted
Resilience Built on Hope: Zia’s KAND Story
Murdoch Children’s Research Institute (MCRI) in Australia recently shared the story of Zia, a nine-year-old who loves music and is living with KAND. Her mom, Eufratia, describes the long road to a diagnosis at age four, and the sense of belonging her family found after connecting with the KIF1A community. That experience has also inspired Eufratia to begin a PhD in 2027 focused on the experiences and support needs of siblings of children with rare neurodevelopmental disorders, with the goal of improving quality of life for the whole family.
The story also highlights MCRI’s KAND research program, led by Dr. Simran Kaur and co-designed with the KIF1A community. Click the link below to read Zia’s full story.
Upcoming Events
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Oct 15
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, October 15, 2026 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
