Happy June from KIF1A.ORG! Thank you all for reading about what we’ve been up to this month, including:
- Gia’s Closet: Honoring Gia Through Community Support
- Q2 Community Call: Recording Now Available for Viewing
- Upcoming Events: Newly Diagnosed Group Call
- New Research: KIF1A Lived Experience Study from Australia
💛 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 with toys for KIF1A patients during visits to the NEXTGen Clinic, a groundbreaking center of excellence model program dedicated entirely to the clinical care of patients with KIF1A mutations. Through thoughtfully selected toys and activities, Gia’s Closet creates opportunities for smiles, distraction during difficult moments, and meaningful support for children and families navigating their own KIF1A journey.
Spearheaded by the Capello family, Gia’s Closet is a meaningful tribute to the life and legacy of Gia Capello, created to bring comfort, joy, and moments of normalcy to children with KIF1A receiving care at Boston Children’s Hospital. Through this initiative, Gia’s family has created a powerful reminder of the strength, compassion, and connection that define the KIF1A community, and we are honored to partner with them in carrying Gia’s memory forward.
To read more and learn how you can support Gia’s Closet, please click the link in the button below.
2nd Quarter of 2026 Community Call Now Available
🫶 Thank you to all who joined our second community call of 2026. This this one-hour community call featured a guided panel discussion with members of our adult KIF1A community, followed by an audience Q&A session.
This conversation brought together two important perspectives within our community: adults living with KIF1A and parents raising children with KIF1A. Adults can offer a view into challenges, milestones, independence, relationships, healthcare, and quality of life across the lifespan. Parents and caregivers bring their own questions, hopes, and experiences as they navigate the journey with their children. Together, we can deepen our collective understanding of KIF1A and strengthen our vision of what lifelong support, advocacy, and community can look like.
🎥 If you weren’t able to join us, have no fear. Our 2nd Quarter of 2026 Community Call is available on our Private Family Resource page for viewing. If you don’t have access to this page, please email impact@kif1a.org.
🤝 Newly Diagnosed Meet Up for July 2026
Thank you all for your great attendance and participation in last month’s Newly Diagnosed group call. 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, current projects, research opportunities, as well as connecting with other KAND patients and families. Please note that we have shifted the date of our July meet up. We hope to see you there!
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Jul 23
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, July 23, 2026 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom
New Publication: KIF1A Lived Experience Study from Dr. Simran Kaur
This month we are sharing a new study led by Dr. Simran Kaur from the Murdoch Children’s Research Institute. This study sheds light on the lived experiences of individuals and families affected by KIF1A Associated Neurological Disorder (KAND).
Through interviews with the KIF1A community, this study highlights the challenges many families face, including delays in diagnosis, difficulty accessing knowledgeable healthcare providers, and the significant emotional, financial, and caregiving demands of living with a rare disease. Families also emphasized the invaluable role of peer support and the KIF1A community in navigating these challenges. By documenting these experiences, Dr. Kaur and her team hope to improve awareness of KAND, support earlier diagnosis, and encourage more coordinated, family-centered care.
Thank you Dr. Kaur!
On behalf of the global KIF1A community, we extend our sincere thanks to Dr. Simran Kaur for her dedication to amplifying the voices of KIF1A families and pateints and for her meaningful contributions to improving care and support for our community.
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
