*The SUDEP Institute under the EF Umbrella *The SUDEP Biomarker Challenge *NASR and other registries like it *Public awareness campaigns *Legislative efforts in New Jersey, Illinois, New York and beyond *This CNF symposium and it’s yearlong SUDEP initiative
An IEP or individual education Plan is designed to show the whole person. Their likes, preferences, challenges and personality.
He is a daredevil…from go karts to 4 wheelers to boats….LGS and disabilities don’t stop him.
3 doors down concert, Just like his dad in do many ways.
Many of our children need pictures and multiple ways to communicate when the words aren’t there for them.
Joey loves water.
Our most recent family photo.
Please ask questions My phone number is 716 720 6749 My email is firstname.lastname@example.org Or message me I am part of our social media group
SUDEP and Safety
Risks in Epilepsy:
Understanding Sudden Death and
Advancing SUDEP Awareness
Tom Stanton ⎪Danny Did Foundation ⎪ Dannydid.org
It is important that you are the voice for your
child. You know them best.
Joey loves music. Music is a like and preference
that is used as a tool to teach and differentiate
The PLEP is the narrative section that speaks
directly to academic, social, physical and
management needs…..You have a voice here. This
is where you can best share your child…..
This is Joey…so happy to hear he is going to see his
big brother. He is playing with his musical toy that
gives letter sound correspondence….from his big
LGS doesn’t stop our children from loving physical
activities and interactive and physical ways of
learning…..it means adaptations. These are
expected and necessary in the school setting. They
are responsible for making that happen.
No matter where you live, the family is the driving
force behind your child’s education. You are the
primary person who has a say….always ask for
support when you need it. Its your child’s right to a
fair and free education.
Share with the school what makes your child
happy. LGS individuals don’t love being “seizure
sick” but they do love life and school when it
meets their needs…
Joey is a kid….a teen. He is in many ways like
every other child….
It is important we help the school and educators
understand physical and medical challenges…not
just academic challenges.
Just remember the teacher does know your
child best and loves your child…that is why
they do what they do, but your voice, your
concern, your knowledge only helps the
teacher advocate if you communicate and
share life at home….especially meds….so
important. They don’t know what they aren’t