What We’ve Learned Along the Way.

Lissencephaly is a rare neurological condition that affects how the brain develops before birth. The word lissencephaly literally means “smooth brain.” In a typical brain, the surface forms folds and grooves as it develops. In lissencephaly, those folds do not fully form, leaving the brain with a smoother appearance.

Because the brain’s structure develops differently, people with lissencephaly may experience a range of challenges. These can include developmental delays, differences in muscle tone and movement, feeding difficulties, and seizures. The severity can vary widely from person to person.

Lissencephaly is most often caused by genetic changes that affect how neurons move into place during early fetal development. Advances in genetics, imaging, and research are helping doctors better understand these brain malformations and improve diagnosis and care.

While lissencephaly is rare, individuals with the condition are part of a strong and growing community of families, advocates, clinicians, and researchers working to raise awareness and support progress in care and research.

First things first — take a breath. Whether this diagnosis is for your child, grandchild, niece, nephew, or someone you love, remember: they are still the same person they were before the diagnosis simply gave a name to what’s happening in their life. The silver lining is now that their condition has been identified, you can start getting proper care.

The families at Liss Not Less are walking the path you’re about to begin. We won’t pretend to have all the answers — every medical journey is unique — but we’re here to share what we’ve learned and the resources that helped us along the way. If we can make the mountain ahead feel even a little smaller, we’re here for that.

Please feel free to reach out anytime — we’ll do our best to respond as quickly as we can. Building a community around lissencephaly and other neurological complexities is one of the reasons this nonprofit exists, and being there for one another is at the heart of it.

Disclaimer: The families behind Liss Not Less are not medical professionals. The experiences and resources we share come from our personal journeys and are intended to provide support and community, not medical advice. Always consult your physician or qualified healthcare provider for medical guidance.

We’re always excited to hear new ideas for events that support the Liss Not Less mission. Please email info@lissnotless.org with your idea and the best way to reach you.

There are many ways to support Liss Not Less. Whether you attend an event, share a story, or make a donation to support research, you’re helping raise awareness for lissencephaly — and that’s the whole point.

One of the easiest way to get involved is by following us on Instagram and liking and sharing our posts. Do not underestimate the power of social media, and how much this helps us work towards our goal of spreading awareness.

Of course, we welcome support in any form. Whether it’s a donation, an idea for an event, or simply reaching out to share how our mission has impacted you, it all helps move this work forward.

Liss Not Less serves as the conduit for all monetary donations and is committed to transparency in how those funds are used.

Donations made through the Liss Not Less website first support the essential administrative and operational costs required to responsibly run the organization and sustain its programs and mission. Of the remaining funds, a portion is directed to the Special Purpose Fund at Children’s National, while the remaining portion is distributed to the beneficiaries designated by our nonprofit to help support current and future medical needs.

A Special Purpose Fund (SPF) is exactly what it sounds like — a donation earmarked for a specific mission or purpose. 

At Liss Not Less, our SPF at Children’s National Hospital supports research focused on diagnosing and better understanding lissencephaly and related brain malformations: Integration of Genomics and Machine Learning

As a fun side note, we’ve already seen the impact of this work — the research has helped identify Callie’s specific genetic mutation. (Don’t ask us how it works though… that’s way above our pay grade!)

Of course! You can find our donation page for Children’s National Hospital here.

Donations made directly through Children’s National are separate from general Liss Not Less donations, and 100% of your contribution goes directly to the Special Purpose Fund.

Feel free to fill out our contact form if you’d like like to get in touch. You can also send us a message on Instagram.