Donations from United Kingdom
FOXG1 syndrome is a genetic neurological disorder caused by a mutation to the FOXG1 gene, which severely impacts a child’s cognitive and physical ability and health. Those affected are typically unable to sit up, walk, talk, and take care of their basic needs. Most children with FOXG1 syndrome suffer from seizures and require a feeding tube.
The research around FOXG1 syndrome could lead to answers for many other disorders. Since FOXG1 is one of the first and most fundamental genes formed during brain development, scientists believe FOXG1 holds the key to unlock brain disorders affecting millions, including autism, schizophrenia, brain tumors and more.
We are the parents of children with FOXG1 syndrome and we are dedicated to:
- Finding a cure for all patients with FOXG1 syndrome (all ages, all mutation types, all geographies).
- Providing equal access to a cure for all patients with FOXG1 syndrome worldwide.
- Continuing to uncover the links between FOXG1 and related brain disorders affecting millions of people.
While a host of eminent researchers / scientists are submitting proposals for their research projects, a very strong Scientific Advisory Board with members from Hôpital Necker, SISSA, Harvard, Yale and other prestigious Universities in Europe and around the world, is guiding us on which projects to fund.
Our path to a cure follows four phases. We are currently in Phase One.
Phase One: 1-3 years / funding needed: 〰$1-2 million
- Generate and characterise assets for testing (build FOXG1 mice models and patient derived stem cells (iPS cells)
- Study the models to understand the impact of FOXG1 on the brain and body
- Identify therapies and evaluate efficacy – testing to see if the FOXG1 gene restoration alleviates symptoms – learn which time points are effective for treatment – test safety in animals
- Screen existing FDA approved small molecules on identified biological pathways that can modulated
Phase Two: 1-2 years / funding needed: 〰$2-6 million
- Pre-clinical testing of successful therapies
- Important feasibility, iterative testing and drug safety data are collected
Phase Three: 1-5 years / Biotech budgets
- Human clinical trials
Phase Four:
- FDA & other country agencies approve disease-modifying therapies for FOXG1 mutations
The German Foundation, FOXG1 Deutschland e.V., is the European affiliate of the FOXG1 Research Foundation for raising funds and connecting researchers. It partners with the TGE network (Trans Giving Europe) who have entities in each European country, so we can offer tax-deductible donation options to our generous donors in Europe.
Parents of FOXG1 children are available to explain how to donate in your country. Please find their contact information here:
Familie Schneider – mit Foxi Leonie – im Interview mit Radio 8
Am Mi., 30.10.2019 informierte Radio 8 im Interview mit Familie Schneider – und Foxi Leonie – über den Gendefekt FOXG1 und den Verein FOXG1 Deutschland e. V. Sollten Sie die Beiträge verpasst haben, gibt es hier eine kleine Auswahl an Mitschnitten, die Sie anhören können.
WICHTIG: Webinar für Eltern und Betreuer/-innen von Kindern mit dem FOXG1-Syndrom
Am Sonntag, 17.11.2019 findet ein Webinar für Eltern und Betreuer/-innen von Kindern mit dem FOXG1-Syndrom statt. Hier erfahren Sie mehr über die verschiedenen Mutationen unserer Kinder. Die Ergebnisse resultieren aus der Patientendatenbank, in der alle Eltern ihre Kinder registrieren sollten…
Zeitungsbericht in der „Heilbronner Stimme“ – Ein Roadtrip für die Foxi-Kinder
Anlässlich des Empfangs von Ralf und Philipp (U1k) aus der Schweiz, die einen Roadtrip von Zürich nach London unternommen haben (wir berichteten) waren auch der
Zebrafischprojekt – kleine Helfer liefern wichtige Erkenntnisse
Am 10.09.2019 ist der unten stehende Artikel über uns im MOMO-Magazin erschienen (www.momo-magazin.de). Das Zebrafischprojekt ist ein Projekt, für das wir noch dringend Spenden benötigen