News
Seizure Action Plan: World Epilepsy Day
February 12th is World Epilepsy Day, and epilepsy is one of the most debilitating characteristics of FOXG1 syndrome. According to the FOXG1 syndrome patient registry study, more than 61% of FOXG1 patients suffer with seizures.
We want to share this wonderful resource from The Epilepsy Foundation. More.
February 12th is World Epilepsy Day, and epilepsy is one of the most debilitating characteristics of FOXG1 syndrome. According to the FOXG1 syndrome patient registry study, more than 61% of FOXG1 patients suffer with seizures.
Our friends at The Epilepsy Foundation have put together this great resource: A Seizure Action Plan.
Why is it important for FOXG1 patients to have a Seizure Action (or Response) Plan?
You and your family play in central role in your seizure management.
Your success in managing epilepsy will depend on being prepared to tackle whatever comes your way – from understanding your epilepsy and maintaining seizure control to responding to seizures and managing your safety.
Seizure Action Plans can help you organize your seizure information and have it available when and where you need it. A prepared plan can help you know what to do to prevent an emergency or tell others what to do in emergency situations. You can also adapt these plans to different situations in your life.
By helping you be prepared, seizures or the fear of seizures won’t prevent you from participating and enjoying your life to the fullest.
Find Your Local Epilepsy Foundation
How do I make a Seizure Action Plan?
Use these forms to help create your seizure plan.
Explore our Toolbox for other forms - including forms in other languages - that might be helpful to you.
Print out the "Seizure Action Plan" and follow along as you work through each section. If you are missing information or don’t know what to do, write it down on your "To Do List" and "Questions For My Health Care Team." Take these forms with you to your next office visit and ask for help.
If you are a parent of a child with epilepsy, you can use the "Seizure Action Plan" specific to schools.
To create an electronic plan, download a seizure diary app to track and manage your seizures.
Review your completed plan with your doctor or nurse. Make sure you have the information correct, especially the information on types of seizures and emergencies, doses of medicines, and how to respond to seizures and possible emergencies.
After everyone has signed off on the plan, make copies!
Keep one with you at all times – in your purse, pocket or wallet, or backpack.
Put one in a central place in your home.
Give one to people who are with you most frequently (if you feel comfortable with this).
If you are a parent of a child with seizures, give one to the school nurse so appropriate people will know what to do if your child has a seizure. Make sure that your child knows you are doing this and is part of the process.
If you or your child goes to camp or other programs where she may spend a lot of time, give a copy to the camp nurse, counselor, or person in charge. Again, make sure your child knows you are doing this and is part of the process.
Review the plan with your health care team and family on a regular basis – at least once a year or if seizures or your treatment changes.
Contact the Epilepsy Foundation Helpline here
Help FOXG1 Ukrainian Family Rebuild!
The FOXG1 Research Community has helped get a FOXG1 family safely out of the warn-torn Ukraine! Now, they have to rebuild thier lives. Eva is a 3-ear-old child with the severe rare disease called FOXG1 syndrome. She suffers from seizures and is disabled. They are on thier way to safely, but they lost everything. This is how you can help. Thank you!
UKRAINIAN FOXG1 FAMILY
THE FOXG1 Research Community successfully helped get a FOXG1 family of five safely out of the war-torn Ukraine.
Elena and her husband have been living a complete nightmare with 3-year-old FOXG1 daughter Eva, a 6-month-old baby, and Elena's mother. They have lost everything. Eva needs seizure medication, Sabril and Prisim. They need a home. They have to completely rebuild their lives in Poland.
PLEASE DONATE HERE
Thank you for any help. Every dollar will help them rebuild their lives.
This was only made possible due to the incredible humanitarian operation - Project Dynamo! They do the impossible to save lives!
To Support Project Dynamo please DONATE HERE
For more information about FOXG1 syndrome and The FOXG1 Research Foundation please visit www.FOXG1research.org
The FOXG1 Research Foundation is the global organization driving the science to find precision treatments and ultimately a cure for every child in the world with FOXG1 syndrome. At the same time we are dedicated to advocating for and supporting FOXG1 families through this difficult journey.
To additionally help donate to the science to change the face of this heartbreaking disorder, please go to www.foxg1research.org/donate
We can not do what we do without donations. We are so grateful for you help.
Please follow us on social media: @FOXG1Research #FOXG1Research
and reach out any time [email protected]
From the bottom of our hearts, thank you for helping Elena, Eva and their family!
*Donations are US currency.