KCNA2 Epilepsy Global Connection

KCNA2 Epilepsy Global Connection Join the KCNA2 Epilepsy Global Support Community on our quest for more information, research, treatments and a cure.

https://youtu.be/j3pzKDZbxeQ?si=LcRl5ywRSNoJW0K-PART 2 with Dr. Gray, CMO of Toolbox Genomics takinga bout how pharmacog...
05/29/2026

https://youtu.be/j3pzKDZbxeQ?si=LcRl5ywRSNoJW0K-
PART 2 with Dr. Gray, CMO of Toolbox Genomics takinga bout how pharmacogenomics and genomics may help make informed treatment decisions.

In Part 2 of this series of the KCNA2 & Rare Epilepsy Podcast, Dr. ...

https://youtu.be/uv4rxIFmyp0?si=_XerXi0rMHKb20XVUnderstanding Genomics and Genetics and how people with rare epilepsy ca...
05/14/2026

https://youtu.be/uv4rxIFmyp0?si=_XerXi0rMHKb20XV
Understanding Genomics and Genetics and how people with rare epilepsy can better understand symptoms...

In this episode of the KCNA2 & Rare Epilepsy Podcast, Nancy sits down with Dr. Erika Gray, pharmacist and Chief Medical Officer of Toolbox Genomics, to break...

https://youtu.be/d0aKgaOBxtY?si=l5LL-ToYQWDE3Zc4Monica Lopez talks about SUDEP, stigma and how she felt isolated as a ch...
05/07/2026

https://youtu.be/d0aKgaOBxtY?si=l5LL-ToYQWDE3Zc4
Monica Lopez talks about SUDEP, stigma and how she felt isolated as a child with epilepsy... Listen as she shares her insights and experiences...

In this episode of the KCNA2 & Rare Epilepsy Podcast, we welcome back epilepsy advocate Monica Lopez Morales for an honest and empowering conversation about ...

đź’ś New Blog: Thinking About an Epilepsy Bracelet?For many families, the question starts simply: Do we need one? When is t...
05/05/2026

đź’ś New Blog: Thinking About an Epilepsy Bracelet?

For many families, the question starts simply: Do we need one? When is the right time?

An epilepsy bracelet isn’t just a piece of jewelry—it’s a way to communicate when your child can’t. In an emergency or unfamiliar situation, it can help others respond quickly and safely.

In this blog, we gently walk through:
✨ When families start considering a bracelet (and why timing looks different for everyone)
✨ What information actually matters most to include
✨ How to balance comfort, sensory needs, and everyday wear
✨ The choice between visibility and privacy

One of the most important reminders: a bracelet doesn’t mean you’re expecting something bad to happen—it means you’re creating a safety net.

And if you’re feeling emotional about the decision… that’s normal too. It’s practical, protective, and sometimes heavy—all at once.

👉 Read the full blog here: https://www.kcna2epilepsy.org/epilepsy-bracelet-kcna2-things-to-consider/

Guidance for families navigating KCNA2 on whether an epilepsy bracelet makes sense. How to choose one that supports safety, comfort, and independence.

https://www.youtube.com/watch?v=yCgVOFlohgE&t=1sConversation with Dr. Ulrike (Uli) Hedrich-Klimosch about understanding ...
04/30/2026

https://www.youtube.com/watch?v=yCgVOFlohgE&t=1s
Conversation with Dr. Ulrike (Uli) Hedrich-Klimosch about understanding rare epilepsy researched....

2 likes, 1 comment. "Understanding KCNA2 Epilepsy with Researcher Dr. Ulrike (Uli') Hedrich-Klimosch & Dr. Nancy Musarra"

🥑💜 New Blog: Can Diet Help Manage Seizures?You may have heard of the ketogenic diet—but did you know it’s been used for ...
04/28/2026

🥑💜 New Blog: Can Diet Help Manage Seizures?

You may have heard of the ketogenic diet—but did you know it’s been used for nearly a century to help manage epilepsy?

Originally developed to mimic the effects of fasting, this high-fat, low-carbohydrate diet can help reduce seizures in some individuals—especially those who don’t respond to medication.

In our latest blog, we break down:
✨ What the ketogenic diet actually is (beyond the trends!)
✨ How it may help reduce seizure activity
✨ Who it might be appropriate for—and why it must be medically supervised

For some families, this approach has been life-changing. For others, it may not be the right fit. But understanding all the options can empower better, more informed care.

👉 Read more here: https://www.kcna2epilepsy.org/ketogenic-diets-are-thought-to-help-people-with-seizures/

Learn how the ketogenic diet may help seizures in KCNA2-related epilepsy and what families should weigh before starting with their care team.

https://youtu.be/jxhm2_z9SqA?si=4rHrYE0oSlpMpSjqWatch, Listen, Learn and SHARE... Let the world know about KCNA2 and RAR...
04/23/2026

https://youtu.be/jxhm2_z9SqA?si=4rHrYE0oSlpMpSjq
Watch, Listen, Learn and SHARE... Let the world know about KCNA2 and RARE Epilepsy Podcast...
What is it like to have a seizure? Monica shares her story...

2 likes, 1 comment. "What Does a Seizure Feel Like? Real Stories from Monica Lopez Morales and Dr. Nancy Musarra"

đź§ đź’ś New Blog: Creating a Seizure Action Plan for CaregiversLetting someone else care for your child when seizures are par...
04/21/2026

đź§ đź’ś New Blog: Creating a Seizure Action Plan for Caregivers

Letting someone else care for your child when seizures are part of daily life can feel overwhelming. But you don’t have to do it alone—and you don’t have to leave things to chance.

A seizure action plan is more than a document—it’s a lifeline that helps others respond with confidence, clarity, and calm.

In this blog, we walk through:
✔️ What a seizure action plan should include
✔️ How to clearly describe your child’s unique seizure patterns
✔️ When to give medication or call for help
✔️ Tips for preparing teachers, babysitters, and caregivers

Every child’s seizures can look different, which is why having a personalized, easy-to-follow plan is so important. It helps caregivers act quickly and safely—without panic or confusion. ()

And just as importantly, it helps you breathe a little easier when you’re not there.

👉 Read the full blog here: https://www.kcna2epilepsy.org/seizure-action-plan-for-caregivers/

Learn how to create a seizure action plan for caregivers outside your home. Guidance for KCNA2 families navigating school, babysitters, and support.

BIG NEWS EVERYONE... Its real this time.  Our website is up and running with new features and in 12 languages... This is...
01/23/2026

BIG NEWS EVERYONE... Its real this time. Our website is up and running with new features and in 12 languages... This is just the start to many postive things to come. Please check out www.kcna2epilepsy.org and share the link with everyone you know. THANK YOU!!! Nancy

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