The Italian translation of the summary of the FOXG1 Science Symposium 2020. Riepilogo del FOXG1 Science Symposium 2020
Eine Zusammenfassung des FOXG1 Wissenschafts-Symposiums 2020
FOXG1 2020 科学研讨会的回顾
Uma recapitulação do “FOXG1 Science Symposium 2020”
El Simposio de ciencia FOXG1 2020
Un récapitulatif du Symposium scientifique FOXG1 2020
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.
AAC for FOXG1 Syndrome
Communication, as well as other struggles stemming from the condition, can feel like a daunting and almost impossible task for families facing FOXG1. Here, the CoughDrop app – along with other communication products – can be found and used as available resources to improve communication.
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
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.