I clearly remember the day we first talked about the idea—with Jae and Soo Lee—of their lab becoming the FOXG1 Research Center of Excellence.
Well, the University at Buffalo not only embraced this vision but helped make it a reality. Yesterday, on September 24th—also my 19th wedding anniversary—we cut the ribbon and officially celebrated the FOXG1 Research Center at the University at Buffalo. The Opening Ceremony was followed by a brilliant FOXG1 Science Symposium with speakers from the lab and the FOXG1 Research Foundation.
This FOXG1 Research Center is remarkable for many reasons:
1. It's remarkable for an ultra-rare disease like FOXG1 to have its own dedicated lab with 22 brilliant scientists solely focused on our disease.
2. It's remarkable for an academic lab to move into translational science with a mission centered on finding treatments for patients.
3. And most uniquely, for the leaders of this lab—Drs. Jae and Soo Lee—to be parents to a child with FOXG1 syndrome themselves. Beautiful Yuna is now 15 years old.
Robin Schulze, Dean of College of Arts and Sciences at UB words about Jae and Soo Lee hit the nail on the head. She said:
"This research center represents a bold step forward not only for the university but for the future of science. The center means we are that much closer to finding a cure for the neuro-developmental disorder, FOXG1 syndrome."
"When I think about what science can be, Soo and Jae's faces appear before me. We don't often think of hope and love being a a part of science , but with Soo and Jae, Hope and Love are the BASIS of science."
The words Hope and Love echoed throughout the day....
The day was incredible—emotional, powerful, inspiring, and so much fun!
Our FOXG1 team is truly a family.
We work together, support each other, and share the joys and struggles of parenting our FOXG1 children while driving research to find a cure. Our conversations bounce from miralax to glial cell myelination like it's nothing.
This is a bond unlike any other. We were joined by many members of our FOXG1 Research family, including Steve Hille from our FRF Australia chapter, who flew 20 hours to be there. Sarah's dad, Nikhil; Tessa's mom, Amber; Gianna's grandparents and aunt, and more -it was a family affair.
The day before the ribbon-cutting, our leadership team was in Philadelphia for an Advisory Board meeting with key leaders in rare disease neurology to work towards designing endpoints for our gene therapy clinical trial. A moving tidbit: one of our amazing advisors, Elizabeth Berry-Kravis, wears colorful rare disease bracelets- covering her forearms- with the promise to remove each one only when a cure is found.
And what’s a trip to Buffalo without visiting Niagara Falls? There’s something about making wishes in front of a natural wonder; that rainbow that lives in the mist of the rushing water is my wink of confirmation.
Thinking back to the early days when I felt desperate for Josie’s future, when so little was known about FOXG1 syndrome. I remembered my long phone conversation with Nasha, when we dreamed big: If we build it…
Fast forward to today where the walls of the University at Buffalo's Cooke Hall bear the words: The FOXG1 Research Center.
They will come.
Thank you to everyone who makes this possible. We still have a lot of work to do, but wow, have we come a long way.
The entire day can be viewed here.
If you would like to support the work towards a cure for FOXG1 syndrome, please visit www.foxg1research.org/donate - we are so grateful.
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