The FOX Den for FOXG1 Parents & Caregivers - March Issue
FOXG1 Advocacy Team
FOXG1 advocates are uniting to amplify our voices and drive meaningful change. Join us for the next FOXG1 Advocates meeting on April 16th at 12 PM EDT.
This is an open invitation to all supporters!
Global Leadership Board - Calling All Country Leads!
The FOXG1 Research Foundation Global Leadership Board (FRF GLB) is dedicated to supporting FOXG1 families worldwide. We’re looking for passionate parent-leaders to serve as country leads, helping keep families connected and informed.
Exciting News from the FOXG1 Research Center
Dr. Soo-Kyung Lee has been chosen as this year’s honoree for the College of Arts and Sciences Spotlight Symposium Series at The University at Buffalo! We are thrilled to celebrate Dr. Lee’s achievements.
Join the FOXG1 Fundraising Team!
FOXG1 gene therapy is progressing, but we need your help to raise funds for clinical trials. Be part of the change—join our bi-weekly Zoom fundraising meetings. Form to join is in the comments.
FOX Moms Prayer & Share
FOXG1 Moms gather virtually every Wednesday at 12 PM EDT to share their joys and challenges unique to our community. Whether you join weekly or drop in as needed, you’re always welcome. Hosted by FOXG1 mom Lauren Higdon.
FOXG1 Parents in the News
The Strait Times - Singapore
Kristal Mir and her son, Atlas, were recently featured in an article highlighting their journey with FOXG1 syndrome and raising awareness about rare diseases.
The Herald Dispatch - West Virginia
Marisa Jackson continues to be a strong advocate in her community, pushing for Section 504 protections for children with disabilities.
Will Takes the Hill!
The Dunham family joined MomsRising Together at Capitol Hill to share how proposed Medicaid budget cuts could impact families like ours. We are incredibly proud of their advocacy!
FOXG1 Research Foundation on the Conference Run
SCOPE Summit
Nasha participated in a keynote panel at SCOPE, speaking on FRF’s innovative model for drug development and why centering patients is critical.
Charles River Cell & Gene Therapy Summit
Gai Ayalon represented Patient Advocacy Groups (PAGs) on a panel filled with biopharma leaders, emphasizing that PAGs are now drug developers, not just advocates. His key takeaway? If there’s no natural history study for your disease, build one.
Up Next: Rare Disease Summit
Nasha will be speaking about innovative financing and partnerships for rare disease drug development—stay tuned!
Chipotle for a Cure - Host a Fundraiser!
From now until May 31st, we’re challenging YOU to host a Chipotle fundraiser in your local area. It’s a great way to raise awareness, celebrate your child, and fundraise for the FOXG1 Research Foundation.
Current scheduled fundraisers:
Jacksonville, NC on March 15th
Asheville, NC on March 23rd
Bloomington, IN on April 1st
Amherst, NY and East Rutherford, NJ on April 6th
Corona, CA on May 6th
Check the pinned post in the FOXG1 Research Parents Connect group for full details.
Live Joyfully Education Ambassador Program
Help spread disability inclusion in schools! The Live Joyfully Education (LJE) program is designed to teach children about rare diseases and the importance of inclusion.
More details coming soon!
Early Access & User Testers Needed – Chat with Your Medical Records!
Citizen Health is launching a new feature allowing users to securely chat with their medical records for quick summaries and insights.
If you’d like early access, register your interest now! Selected testers will receive compensation, and feedback sessions take only 10-15 minutes. Don’t miss this opportunity to help shape a valuable tool for our rare disease community!
