Tom Stanton from the Danny Did Foundation discusses SUDEP, sudden unexpected death in epilepsy, and safety devices currently available

1. Risks in Epilepsy:
Understanding Sudden Death and
Advancing SUDEP Awareness
Tom Stanton ⎪Danny Did Foundation ⎪ Dannydid.org

2. Danny Stanton’s Story

3. Danny’s New Place in the World:
Danny Did Foundation
Protecting Kids With Epilepsy.

4. Safety in Epilepsy:
Communication is the Key

5. The Risk of Sudden Death:
- What is SUDEP?
-What causes SUDEP?
-How often does it happen?

6. Risk Factors for SUDEP:
-Uncontrolled seizure activity
-Habitual tonic clonic seizures
-Key: Learn your tailored risk level

7. How to Minimize the SUDEP Risk:
-Talk with your doctor
-Work toward better seizure control
-Track your seizure activity
-Consider alternative treatments

8. Technology and Devices:
Another resource in your toolkit

9. Considering a Device?
5 Things to Think About

10. Examples of Device Systems:
Visit our Dannydid.org to learn
about specific products

11. Considering a Device?
How to talk with your doctor

12. Advocate Community:
Ongoing SUDEP Initiatives

13. Research to Know About

14. We Need You!
There has been progress.
With your help, we can gain more.

15. Questions?
info@dannydid.org

17. It is important that you are the voice for your
child. You know them best.

18. Joey loves music. Music is a like and preference
that is used as a tool to teach and differentiate
Joey’s instruction.

19. 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…..

20. 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
bother.

21. 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.

22. 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.

23. 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…

24. Joey is a kid….a teen. He is in many ways like
every other child….

25. It is important we help the school and educators
understand physical and medical challenges…not
just academic challenges.

26. 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
told