<My article in the July edition of Port Washington Living magazine>
It couldn't be more fitting that Mihali’s tour is dubbed the 'Lifted Tour.'
On May 30th, the beloved reggae artist known for his feel-good music, made a memorable stop in Port Washington to play a benefit concert for the FOXG1 Research Foundation, which I co-founded in 2017 for a cause close to my heart.
As previously featured in the April 2023 edition of Port Living Magazine, I am the mother of Josie, an amazing 12-year-old girl born with FOXG1 syndrome—a severe and rare neurological condition.
From the moment of Josie's diagnosis, this town has continuously lifted and supported our family in countless ways.
Rewind to our first FOXG1 benefit concert with Chris Pepe at the Landmark Theater in 2018—there was very little known about the disease, no concerted research underway, little patient data, and little awareness.
Fast forward to now, standing on that same stage six years later, I shared the exciting news that we have built innovative platforms for data and research, and we are now advancing a promising gene therapy into clinical trials in the next few years. This breakthrough could soon offer life-changing treatment for Josie and for FOXG1 children worldwide.
I also shared that the impact of our work extends far beyond FOXG1 syndrome.
Originating right here in Port Washington, our foundation now operates like a highly efficient biotech company that is not only changing the course of this devastating disorder, but is radically improving the rare disease drug development landscape.
There are 30 million people in the US living with rare diseases, impacting over 100 million family members.
Driven by innovation and the urgency of parents, we've crafted a blueprint that dramatically cuts the time and cost required to bring rare disease drugs to market– by more than half.
This model we have pioneered is already being replicated by numerous other rare disease groups we mentor.
We have also become vocal advocates on a national level. In February, my FOXG1 Research Foundation co-founder was invited to speak at the White House for the inaugural Rare Disease Forum— propelling FOXG1 awareness to new heights.
On this road to accelerating treatments for rare diseases, we are also helping to cultivate a new generation of disabilities awareness.
In my speech, I also highlighted how Josie inspired me to write "Joyfully Josie," a children’s book that teaches kids about disabilities and the importance of inclusion. This book is paving the way for a future where empathy and understanding are instilled from a young age—key ingredients to a successful life.
I had the opportunity to read 'Joyfully Josie' to students during an assembly at Manorhaven Elementary School, an experience that was both rewarding and effective in fostering meaningful conversations and deeper understanding of inclusion.
The Mihali FOXG1 Research Foundation benefit concert, sponsored by Stewey’s Factory Outlet—a hidden gem on Manorhaven Blvd—was a tremendous success.
The energy of the music, the dedication of our volunteers, including Josie’s brother, Tanner and his friends, and the enthusiasm of the crowd, exemplified the incredible support and spirit of our community.
This night was not just a celebration of progress, but a testament to the power of our united mission that began right here in our town.
Thank you, Port Washington, for continuing to lift us on this journey. Together, we will greatly impact and lift up countless people on the road to cure FOXG1 syndrome.
Please visit www.foxg1research.org and www.joyfullyjosie.com to learn more.
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