FOXG1 Research Foundation is an outstanding parent led organization that is, not only built on love, compassion and support, but is backed by incredible scientists that will help find cures for all children with rare genetic disorders. I have been so inspired and impressed by their team, resources and research thus far! I have learned so much from them and will continue to give all my support/ contributions to this organization as they diligently work to find a cure and spread awareness. I urge you all to do the same.
The FOXG1 Research Foundation is unique and critical for the FOXG1 community. They provide resources, guidance, and support for families whose children are diagnosed with FOXG1. Simultaneously, they offer hope to the children through their tireless work on therapies and their relentless push for a cure. Their accomplishments in such a short time are truly amazing.
The foundation is doing everything to cure my sons FOXG1 condition. As complex as this genetic disorder may be, they are blazing a trail to find a cure for my son and kids like him. Improving our children’s quality of life is the forefront of their mission.
The FOXG1 Research Foundation is an exceptional, mission-driven organization run by two extraordinary moms of daughters diagnosed with FOXG1 Syndrome. As another mom of a daughter with FOXG1 Syndrome, I have the utmost faith in their ability to lead the charge towards finding treatments and accelerating research towards a cure. As a parent-run Foundation, they have a deeply personal connection to this rare disease. This passion and commitment has led to collaborations with medical professionals and researchers to establish a Scientific Advisory Board, ensuring that progress is made in understanding and treating FOXG1. That said, research would not be possible without funding. The Foundation has successfully organized numerous fundraising initiatives each November during FOXG1 Awareness Month, raising much-needed financial support to fund ongoing research initiatives, including the Patient Registry and Natural History Study, as well as new research projects. As both a patient and donor-centric organization, they do an excellent job communicating the impact of donations towards the “path to a cure.” As a FOXG1 parent and donor, I receive regular email updates via their newsletter and through frequent posts on the Foundation’s Facebook page as well as the associated FOXG1 Research Parents Connect Facebook group. Last, but certainly not least, the Foundation has put significant energy towards supporting the larger FOXG1 community through support networks and education. Through webinars, the symposium & parents conference, FOXG1 chapters, the Facebook group, and resources on their website for newly diagnosed families, they have helped create a sense of community among individuals and families affected by FOXG1. For all of this, I am eternally grateful to the FOXG1 Research Foundation - thank you for your tireless efforts!
When I first heard of my daughters diagnosis I was devastated. I felt like there was no hope and life was over. But then I heard of FOXG1 Research Foundation and I felt that hope came back to me. The increadable work they have done and how far they have come to find a cure is just mindblowing. Seriously I don’t know where I would have been today without them. Not just fighting to find a cure but also creating an amazing community for parents and caregivers. They need all cred they can get, I can’t think of any other non profit that deserves it more.
A foundation that inspires hope!
I am a parent volunteer for the FOXG1 Research Foundation. I have been deeply inspired by everything they do for children with FOXG1 syndrome.
The foundation is led by a passionate and dedicated team of scientists, clinicians, and advocates. They are working on various research projects, including gene therapy, drug discovery, and natural history studies. They are also working to build a community of families affected by FOXG1 syndrome to share support and learn from each other.
I am proud to be a volunteer for the FoxG1 Research Foundation. I know their work is making a real difference in the lives of children with FOXG1 and their families.
The foundation was a crucial resource for a parent of a newly diagnosed infant. It’s a scary place to be, but the foundation provides so many resources for whatever level of research you are comfortable. Potentially more important, it provides connections to parents all over the world who have been walking in your shoes for years and are dedicated to giving you a hand or a hug.
As a parent of a child with FOXG1 I couldn’t be more grateful for this foundation. The foundation has helped connect us to other families. They’re making true progress towards finding ways to improve the lives of people with FOXG1 through amazing research and they’re always looking for ways to spread awareness about FOXG1.
The FOXG1 Research Foundation has been, and continues to be, so important to our family. When our son was diagnosed with FOXG1, we were crushed and felt helpless. We found the FOXG1 Research Foundation a month after receiving the diagnosis and their mission and passion for helping all children with FOXG1 gave us hope. We are so thankful for all the work they have done and continue to do and for the community around us!
This organization is so supportive and doing such incredible work on the path to finding a cure and studying FOXG1Syndrome!
When I volunteered in 2018 to assist the Foundation with their first Science Symposium in San Diego, I knew quickly that I wanted to do more to support them. As a mom to 17 year old Eila with FOXG1 Syndrome, I was driven to lend my knowledge and resources and joined their Board as CFO. I continue today in a new role in charge of Fundraising and Events, and I can not imagine a more passionate group of global parent led volunteers making such outstandingly fast progress on a Path to a Cure for our children! They inspire me every day to do more, be more, smile more!
When my daughter was first diagnosed with FOXG1 Syndrome, my wife and I felt lost. Fortunately, we discovered the FOXG1 Research Foundation. This foundation has treated us like family since day 1. I could not say enough of great things about the folks running this foundation, but here are a few: hard-working, determined, compassionate, intelligent, diverse, talented etc. The list goes on!
The FOXG1 Research team is fighting a mighty battle to help give children who suffer from FOXG1 Syndrome a better life. The foundation has done an incredible job at bringing families and resources together to help educate, inform and support FOXG1 families. While my daughter's diagnosis hasn't been easy on her or my family, the FOXG1 Research Foundation has made us feel like we're not alone. They've instilled hope in all of us and they've inspired us to get involved in the fight against FOXG1 Syndrome.
We founded the FOXG1 Research Foundation in 2017 with a team of dedicated FOXG1 parents with the goal to strategically pave the path to a cure for every child in the world with FOXG1 syndrome. It's a devastating childhood, neurological (non-inherited) genetic disorder and scientists believe a cure is not only possible, but our work can help solve many brain disorders affecting millions of people. We are on the trajectory to clinical trials and with support from donors and volunteers we will reach our goals and give so many children the life they deserve.
This organization has accomplished so much in a short period of time. My son has Foxg1 and I feel fortunate that an organization such as this one exists to find therapies and/or a cure. They are also amazing at creating a community for parents to connect and find resources. Nicole and Nasha are moving mountains for these families and I am forever grateful!