Welcome to the FOXG1 family
Welcome home. The first part of our Mission, to provide hope and support to individuals with FOXG1 and their families via any means possible, is what has brought us together today. We have walked your walk, spent countless sleepless days and nights wondering what this all means for this day, week, month, year… lifetime. Everyone deals with the diagnosis and its impact on their family differently; please know whatever your process is, you are not alone anymore-we will support you and welcome you into our family. To learn a little bit more about his the Genetics behind a FOXG1 mutation, please read Genetics, Decoded.
Connect with Us
– We love social media!
It’s how many of us parents found each other to begin with. If you are a parent of a child with FOXG1, be sure to join the Parent Support Group on Facebook. This is a private group with over 200+ active parent participants, where we can share any and all thoughts about this complicated diagnosis with people who understand it. Please keep an eye out in your Message Request Inbox (find out how to access it here) for the group admin’s message as we only allow individuals with a confirmed diagnosis in the group to protect your privacy.
Se são pais de uma criança portadora do síndrome FOXG1, juntem-se ao grupo de apoio a pais em português no Facebook
Se sei il genitore di un bambino con sindrome FOXG1, assicurati di entrare a far parte del gruppo privato di supporto per genitori in italiano su Facebook
FOXG1 Family & Friends Group on Facebook
Friends, family and others interested in FOXG1 should check out the FoxG1 Family & Friends Group on Facebook to stay in the know and learn how you can support our FOXG1 families.
International FOXG1 Foundation’s page
Don’t forget to ‘like’ the for updates and news.
Also, you can follow us on Twitter!
Interested in a Men’s Group? Check out this support group for dads, uncles, brothers, grandfathers and other men who have a child or family member with CDKL5, RETT, MECP2 and FOXG1 mutations.
Not on Social Media?
Please contact email@example.com for family support information
Meet our families
One of the silver linings of a troubling diagnosis is connecting with other families who understand exactly what you are going through. Get to know some of our FOXG1 family here.
Are you interested in sharing your story? Email your story, a picture and the signed Photo and Story Release Form to firstname.lastname@example.org.
Faces of FOXG1 Calendar
Every fall we assemble a calendar of our very own foxes and sell it as a fundraiser- it makes a great holiday gift! Here is the link to our 2017 calendar, they do ship internationally. Our cover is a dedication to our foxes that we have lost all too soon, and serves to further push is towards treatments and a cure. If you would like your child’s image and birthday to be featured in the 2018 calendar, please submit this form.
Béatrice Fortier Memorial Family Fund
In 2015 we introduced the Béatrice Fortier Memorial Family Fund, in honor of Béatrice, one of our family to passed away suddenly just shy of her third birthday, and in honor of all of the foxes we have lost. This fund was developed to provide funding for medical needs not otherwise covered by insurance. For the application, please click here.
Take Our Survey
We created an informal survey to help us gather information about similarities and difference of each child/mutation. This is, as always, optional, and available on our website by clicking here.
Who doesn’t love getting mail? If you would like your fox to get a birthday card from the Foundation, please fill out this form and click submit. This information will remain private and will not be used for any other purpose.
Want to stay up to date? Subscribe to our newsletter here.
Global GenesⓇ, a rare disease patient advocacy organization, offers RARE Toolkits, which provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are being created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.
Did you Know?
FOXG1 Syndrome was is was once referred to as Variant Rett Syndrome? And that in some countries it has never been associated with Rett Syndrome at all?
Yes, we agree – this makes things complicated. As the science has progressed, researchers have begun to better understand the distinctions between FOXG1 and Rett Syndrome. Since it presents similarly to Rett Syndrome, MECP2 Duplication Syndrome and CDKL5, we actually have a small family of “sister syndromes”, rather than Rett being the “parent syndrome”. We are able to learn from these other teams of dedicated parents and researchers, and we firmly believe that advancements made in any one particular group helps us all. Learn more about our sister syndromes by clicking the links below.