Rare Disease Foundation on the Road to Gene Therapy Brings Families to Fort Lauderdale from Around the World, November 15-17
The FOXG1 Research Foundation, the parent-led organization that is radically transforming the rare disease drug development landscape, is hosting an international conference in Fort Lauderdale from November 15-17, bringing families from across the globe together to learn about gene therapy advancements for FOXG1 syndrome. A highlight includes a presentation by 20-year-old Abraham Weitzman, who, though non-speaking, shares his lived experience using an innovative communication device.
Fort Lauderdale, FL, November 04, 2024 --(PR.com)-- The FOXG1 Research Foundation is proud to announce its FOXG1 Syndrome Parent and Caregiver Conference, set for November 15-17, 2024, at the B Ocean Resort in Fort Lauderdale, Florida. This pivotal event will gather families from across the globe - including Taiwan, Canada, Brazil, France, Italy, Spain, Poland, Russia, and Hungary - united in their mission to find treatments for FOXG1 Syndrome and related neurological disorders.
FOXG1 Syndrome is a rare genetic disorder that affects brain development and function, leading to severe developmental delays, disabilities, and complex medical challenges for affected children. The FOXG1 Research Foundation, a global, parent-led patient organization, is advancing a gene therapy that holds immense promise for these children, while driving transformative change in rare disease drug development.
At the conference, FOXG1 parents and caregivers will have a unique opportunity to hear from leading clinicians and researchers, including Dr. Soo Kyung Lee from the University at Buffalo’s FOXG1 Research Center and Chief Drug Development Officer Gai Ayalon, who will provide updates on the path toward treatments.
The event will also feature a special presentation by Abraham Weitzman, a 20-year-old Columbia University student with FOXG1 syndrome, who though non-speaking, has astounded the rare disease community with his remarkable essays written using his innovative communication device.
A warm welcome will be delivered by Tom Horton, former CEO of American Airlines and a FOXG1 grandfather, who has become deeply committed to supporting the foundation’s mission.
Keynote speakers include:
Terry Pirovolakis, a rare disease advocate and father, who will share his inspiring journey of creating a gene therapy for his son with SPG50, as recently featured in People magazine.
Effie Parks, host of the popular podcast Once Upon a Gene, who will provide insights and experiences from the rare disease community.
This conference will not only serve as an educational platform but also foster community building and support among families navigating the complexities of FOXG1 Syndrome. Participants will have the chance to engage in discussions, share experiences, and learn about the latest advancements in research and treatment options.
“We are thrilled to host FOXG1 families from around the world in this retreat-like setting and to share the progress we are making to advance FOXG1 gene therapy to clinical trials,” said Nicole Johnson. “This conference represents a beacon of hope for our community, showcasing the dedication of researchers and advocates committed to improving the lives of children with FOXG1 syndrome worldwide. I have to pinch myself to see how far we have come, as well as the promise of where we are headed.”
Sponsors of the 2024 FOXG1 Syndrome Parents and Caregivers Conference include the Chan Zuckerberg Initiative, American Airlines, and Amgen.
The Foundation co-founder Nicole Johnson will be signing her children's book on disabilities inclusion, Joyfully Josie.
More Details:
For more information, please visit www.foxg1research.org.
About FOXG1 Syndrome Research Foundation:
The FOXG1 Research Foundation (FRF) is a global, parent-led rare disease patient organization dedicated to advancing treatments for FOXG1 syndrome and related disorders, while advocating for and supporting patients and families worldwide. FOXG1 syndrome is a rare neurological developmental disorder linked to Autism Spectrum Disorder and epilepsy. Founded in 2017, FRF has rapidly emerged as a leader and innovator in the rare disease space, developing novel platforms and an efficient blueprint to accelerate drug development for rare diseases. As a Chan Zuckerberg Initiative partner and recognized through its CEO’s presentation at the inaugural White House Rare Disease Forum, FRF is committed to radically improving the landscape for the 300 million patients affected by rare diseases worldwide. www.foxg1research.org
For further inquiries, please contact:
Nicole Johnson
Executive Director
516-672-2262
nicole@foxg1research.org
foxg1research.org
FOXG1 Syndrome is a rare genetic disorder that affects brain development and function, leading to severe developmental delays, disabilities, and complex medical challenges for affected children. The FOXG1 Research Foundation, a global, parent-led patient organization, is advancing a gene therapy that holds immense promise for these children, while driving transformative change in rare disease drug development.
At the conference, FOXG1 parents and caregivers will have a unique opportunity to hear from leading clinicians and researchers, including Dr. Soo Kyung Lee from the University at Buffalo’s FOXG1 Research Center and Chief Drug Development Officer Gai Ayalon, who will provide updates on the path toward treatments.
The event will also feature a special presentation by Abraham Weitzman, a 20-year-old Columbia University student with FOXG1 syndrome, who though non-speaking, has astounded the rare disease community with his remarkable essays written using his innovative communication device.
A warm welcome will be delivered by Tom Horton, former CEO of American Airlines and a FOXG1 grandfather, who has become deeply committed to supporting the foundation’s mission.
Keynote speakers include:
Terry Pirovolakis, a rare disease advocate and father, who will share his inspiring journey of creating a gene therapy for his son with SPG50, as recently featured in People magazine.
Effie Parks, host of the popular podcast Once Upon a Gene, who will provide insights and experiences from the rare disease community.
This conference will not only serve as an educational platform but also foster community building and support among families navigating the complexities of FOXG1 Syndrome. Participants will have the chance to engage in discussions, share experiences, and learn about the latest advancements in research and treatment options.
“We are thrilled to host FOXG1 families from around the world in this retreat-like setting and to share the progress we are making to advance FOXG1 gene therapy to clinical trials,” said Nicole Johnson. “This conference represents a beacon of hope for our community, showcasing the dedication of researchers and advocates committed to improving the lives of children with FOXG1 syndrome worldwide. I have to pinch myself to see how far we have come, as well as the promise of where we are headed.”
Sponsors of the 2024 FOXG1 Syndrome Parents and Caregivers Conference include the Chan Zuckerberg Initiative, American Airlines, and Amgen.
The Foundation co-founder Nicole Johnson will be signing her children's book on disabilities inclusion, Joyfully Josie.
More Details:
For more information, please visit www.foxg1research.org.
About FOXG1 Syndrome Research Foundation:
The FOXG1 Research Foundation (FRF) is a global, parent-led rare disease patient organization dedicated to advancing treatments for FOXG1 syndrome and related disorders, while advocating for and supporting patients and families worldwide. FOXG1 syndrome is a rare neurological developmental disorder linked to Autism Spectrum Disorder and epilepsy. Founded in 2017, FRF has rapidly emerged as a leader and innovator in the rare disease space, developing novel platforms and an efficient blueprint to accelerate drug development for rare diseases. As a Chan Zuckerberg Initiative partner and recognized through its CEO’s presentation at the inaugural White House Rare Disease Forum, FRF is committed to radically improving the landscape for the 300 million patients affected by rare diseases worldwide. www.foxg1research.org
For further inquiries, please contact:
Nicole Johnson
Executive Director
516-672-2262
nicole@foxg1research.org
foxg1research.org
Contact
FOXG1 Research Foundation
Nicole Johnson
516-672-2262
www.foxg1research.org
Nicole Johnson
516-672-2262
www.foxg1research.org
Contact
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