Blog Post

The FOXG1 Science Symposium 2020 - Recap

The FOXG1 Science Symposium 2020 - Recap

The virtual FOXG1 Science Symposium 2020 was a tremendous success in demonstrating the work towards advancing science to find a cure for FOXG1 syndrome. Scientists from Tokyo, the UK, Italy, California and more gathered with Biopharma industry executives and FOXG1 caregivers to share data and engage in collaborative discussions towards disease-modifying therapies. Read the recap here and watch the panel discussions.

The Rare Disease Crusaders

The Rare Disease Crusaders

I joined Ciitizen and initiated our entry into neurological diseases because I am both passionate and desperate to find an answer for my daughter. At Ciitizen, we’re creating a platform where medical records are collected on behalf of each patient, then automatically digitized into the computational data we need. From there, sophisticated machine learning technology is used to extract clinical data in order to create regulatory-grade Natural History Studies that do not require exorbitant amounts of time, energy, or money. Patient reported outcomes can then be added by us parents.

More importantly, this database of computational data we’re creating will be accessible and open to all patients, parents, caregivers, clinicians, academics, and biopharma researchers. Our goal is to eliminate the slow, manual, and expensive processes that we currently use to collect information and use the best technologies to be quick, cost-effective and more accurate when it comes to developing research.

The View Along the Path to a Cure for FOXG1 Syndrome | An Overview by Nasha Fitter

The View Along the Path to a Cure for FOXG1 Syndrome  |  An Overview by Nasha Fitter

When Amara was diagnosed three years ago, I didn’t even know what a gene was. My background was in technology and business and I wasn’t prepared for the world of science. Luckily, my career had prepared me to tackle an impossible problem that no one has solved before. Being strategic and understanding the various pieces that need to be put together to achieve your end goal is critical in rare disease leadership. I have made mistakes over the past three years, and I have had successes. My goal in this blog series is to share those, and to continue sharing our experiences and journey of the FOXG1 Research Foundation as we work to find a cure for our children and everyone with FOXG1 syndrome.

10 minutes with FOXG1 Super dad Greg Wells \ By M-Team Cares

From the M-team cares blog: With Father’s Day coming up this Sunday, we wanted to know what being a father to children with disabilities really looks and feels like. So we turned to Greg Wells, rock-star dad of two wonderful daughters, Alli and Emma, both with FoxG1. We were touched by his honesty and humility in sharing what fatherhood means in his world. And, after hearing what he had to say, we're pretty sure that Alli and Emma are the luckiest girls in the world to have Greg for a dad!

Meet FOXG1 Mom, Angie Van Wingerden : 10 By MTeam cares

Meet Angie, mom to Eila and twin brothers Jack and Willem. Inspired to contribute her skills toward creating a better life for Eila who was born with a rare genetic condition called FOXG1, Angie volunteers as the CFO and Head of Operations for the FOXG1 Research Foundation.

Below, Angie tells us more about her work with the FOXG1 Foundation, shares a few stories of life with Elia and talks about what it’s like - both the challenges and the rewards - to be a mom to a child with special needs.

January Newsletter: Big Things in 2019

January Newsletter: Big Things in 2019

Looking Back. Moving Ahead.

Wow! 2018 was an incredible first year for the FOXG1 Research Foundation! We cannot thank our supporters, partners, and donors enough  for helping to make 2018 an enormously successful year!
2018 Key accomplishments:
•    Raised $1.3 Million for research
•    Assembled a Scientific Advisory Board consisting of 16 of the world's leaders in
     their fields.
•    Funded six esteemed scientists' projects along our Path to a Cure in the USA,
     UK, and Italy
•    Launched the most comprehensive study into FOXG1 to-date,
     with eight mouse models of all known FOXG1 categories.
•    Developed a global FOXG1 Syndrome Patient Registry
•    Developed an iPSC line Patient Biobank