What FOXG1 Awareness Really Means: Beyond the Month of November
Misha- one of our FOXG1 community members with his mom playing in the snow!
November is FOXG1 Awareness Month, a time when families, researchers, and advocates around the world come together to shine a light on a rare condition that connects us all. For the FOXG1 Research Center, it’s one of the most meaningful times of the year - a chance to honor the families who inspire every experiment, every discovery, and every goal we set for the future.
But true awareness is not defined by a single month. It’s something that lives in the day-to-day lives of families, doctors, and scientists all year long. Awareness is more than social media posts or ribbons; it’s about understanding, connection, and the shared belief that knowledge creates change.
Awareness Is a Daily Act
For FOXG1 families, awareness does not begin on November 1st or end when the calendar turns to December. It is present in the smallest, most personal moments - the conversations at doctor appointments, the introductions at school, the explanations given to friends, therapists, or new caregivers.
Awareness shows up in advocacy. It is the parent who keeps pushing for services and inclusion. It is the sibling who proudly explains their brother or sister’s condition at school. It is the grandparent who tells everyone they meet about FOXG1 syndrome because they believe that one more person knowing might make a difference someday.
Each act of awareness may seem small, but together they form the heartbeat of the FOXG1 community. These moments of education, empathy, and courage are what keep understanding growing far beyond November.
The Ripple Effect of Sharing
Every time someone learns about FOXG1 syndrome, the circle of awareness expands. One conversation might lead to a new advocate. One social media post might reach a researcher looking for a rare disease collaboration. One shared story might help a newly diagnosed family feel less alone.
This ripple effect is how progress begins. It bridges the gap between research and reality - connecting scientific questions to the people and families who motivate them.
At the FOXG1 Research Center, we see this every day. Awareness is not just emotional; it’s practical. It drives new opportunities for collaboration, funding, and participation in research studies. It helps us reach more clinicians, scientists, and geneticists who can help identify FOXG1 earlier and connect families to the resources they need.
Awareness is how science grows stronger. It’s how we make sure no family has to face this diagnosis alone.
Awareness and Research Go Hand in Hand
FOXG1 research cannot exist in isolation. It is built on relationships - between scientists, clinicians, and the families who share their time, experiences, and biological samples to make discoveries possible.
Awareness amplifies those relationships. When more people understand the importance of studying FOXG1, more opportunities emerge to advance science. Awareness encourages new partnerships and ensures that research stays centered on the children and families it aims to help.
Every story shared, every fundraiser organized, every new supporter who learns about FOXG1 syndrome plays a part in moving research forward. Awareness is the bridge that connects the lab bench to the living room - turning data into understanding and understanding into hope.
The Strength of the FOXG1 Community
Behind every research milestone are families who continue to inspire us with their resilience and love. FOXG1 parents and caregivers show what awareness looks like in its truest form - not as a campaign, but as a daily commitment to compassion, education, and advocacy.
Their stories remind the world that awareness is about recognition, respect, and partnership. It’s about understanding that every FOXG1 child has a story worth telling and a future worth fighting for.
The FOXG1 community embodies the spirit of awareness every day - through their advocacy, their openness, and their belief that sharing knowledge is the first step toward change.
Keeping Awareness Alive All Year Long
As we move through FOXG1 Awareness Month, it’s a good reminder that awareness should not pause once November ends. It’s something we carry with us all year long. Every post, every conversation, and every effort to teach others about FOXG1 syndrome adds up to real, lasting impact.
Awareness is not measured in likes or views, but in understanding - in the people who now recognize the name FOXG1, in the doctors who can identify it sooner, and in the researchers who feel inspired to learn more.
To every family who has shared their journey, to every supporter who has spread the word, and to every researcher who has dedicated their work to this cause - thank you. Awareness begins with you, and it continues because of you.
How You Can Help Keep Awareness Going
FOXG1 Syndrome Awareness Month may end, but there are countless ways to keep the momentum alive all year:
→ Share our posts about FOXG1 syndrome on your social media.
→ Tell one new person about FOXG1 and what it means to your family or community.
→ Encourage others to visit the FOXG1 Research Center website to learn about ongoing studies and our research.
→ Reach out to another FOXG1 family and remind them they’re not alone.
→ Support the FOXG1 Research Foundation by sharing or visiting our donation page. Every contribution helps move research forward and supports the families at the heart of our mission.
Each action, no matter how small, helps the world better understand FOXG1 syndrome - and brings us one step closer to treatments and hope for the future.
At the FOXG1 Research Center, we believe awareness is more than a month. It’s a movement powered by families, fueled by science, and built on love. Thank you for helping us keep that awareness alive every single day.
FOXG1 Research Center is dedicated to understanding and finding treatments for FOXG1 syndrome and other neurodevelopmental disorders.
Our Team
Drs. Soo-Kyung Lee, PhD. and Jae W. Lee, PhD. are the principal investigators of FOXG1 Research Center. Our team is full of dedicated individuals with the common goal of studying FOXG1 Syndrome to find treatment options and further understand the condition.
Our Publications
To learn more details about our research, please refer to our publications.
