Updates From KIF1A.ORG
Happy Rare Disease Day from all of us at KIF1A.ORG! Today, we join the global community in honoring Rare Disease Day—a day dedicated to raising awareness and shining a light on the millions of people affected by rare diseases. Here at KIF1A.ORG, we’ve been gearing up all month, and the momentum is building!
While February is a short month, we have a long list to share with you all. Thank you for reading about we’ve been up to this month, including:
- In Case You Missed It: Q1 Community Call is now available for review
- New Resource: KIF1A Primary Care Physician Guide
- We Need Your Input: Developing a support program for KIF1A siblings
- Last Day of Miles That Matter 2026: Let’s finish strong!
- Rare Disease Day in Action: NORD and KIF1A.ORG community in California!
1st Quarter of 2026 Community Call Now Available
🫶 Thank you to all who joined our first community call of 2026 where we discussed:
- Updates and gratitude from KIF1A.ORG
- KIF1A Sibling Support
- KIF1A and Puberty
🎥 If you weren’t able to join us, have no fear. Our 1st 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.
New Resource: KIF1A Primary Care Physician Guide
Receiving news of a KIF1A mutation can certainly bring up a lot of questions. We recognize that, in the journey of one’s diagnostic odyssey and beyond, patients and families are often faced with learning about KIF1A while also introducing complex topics and questions to their primary doctors. To help ease these conversations, we have created the KIF1A Primary Care Physician Guide. This new resource includes:
- General, high-level clinical information
- Information on common symptoms and adjacent resources
- A KIF1A Management Checklist for patients and clinicians to review together
To download this resource and bring to your next appointment(s), click the links below!
New Community Program: KIF1A Support with SideBySideSibs
We are excited to announce that KIF1A.ORG has teamed up with SideBySideSibs to create a program unique to the needs of KIF1A Siblings. Our community is filled with phenomenal siblings to those with KIF1A mutations. Alongside their compassion, love, and care also comes a need for support and a dedicated resources tailored to their needs. This is why the KIF1A.ORG and SideBySideSibs collaboration was born.
What is SideBySideSibs?
SideBySideSibs exists because every sibling deserves to feel seen, supported, and celebrated in the story of inclusion. Across the rare disease and disability communities, sibling-specific support is incredibly difficult to find. When families do find it, resources are often localized, short-term, or prohibitively expensive. Our goal is to help remove these barriers by equipping families to create micro-moments of connection that nurture emotional wellbeing and mental health at home.
How will these resources be developed?
As a first phase of this project, we are asking both siblings and parents to fill out a brief informational survey. Your responses will help us understand the targeted needs of our sibling communities for us to further develop content. Links to each of the surveys can be found below.
We are also looking for 2-3 siblings who are interested in helping develop and provide feedback of our KIF1A Sibling program. If you or someone you know is interested in this role, please email dominique@kif1a.org.
Miles that Matter 2026 Ends on February 28!
We’re in the last day of Miles That Matter for KIF1A, and what this community has already done is incredible.
Because of you, we’ve raised $67,000+ so far. That’s real momentum. Real impact. Real hope for children and families living with KIF1A. With the challenge ending February 28, this last day is about one thing:
showing up together for a strong finish! Here’s how you can be part of the final push—no matter how you participate:
- Log those miles – walk, run, roll, dance, hike… every “mile” still counts
- Join or invite someone new – it’s not too late and some over achievers may like the extra challenge of more miles in less days
- Share why you’re moving – your story inspires more than you realize
- Give if you’re able – even small donations add up fast in this final stretch
- Complete 28 miles or more, submit your results, and you’ll be entered to win one of three $100 Amazon eGift Cards!
It all fuels research, support, and hope for families who need it now. Let’s finish strong. Let’s make these final miles matter.
Fullerton 9-Year-Old With Ultra-Rare Disease Among Participants as Local Business Rallies Community for 4 Million Californians Living With Rare Diseases
Rare Disease Day in Action: NORD and KIF1A.ORG community in California!
Today is Rare Disease Day and our KIF1A.ORG community is spreading the word! Click the link below to learn more about how Superhero Maddox and family are teaming up with the National Organization of Rare Disorders to participate in the “Show Their Stripes” for Rare Disease Day Run!
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
