Eliana: Dravet Syndrome Warrior

05/13/2026

Dravet Syndrome is more than just seizures: It also can come with Neurodevelopmental & Cognitive Impairment. Eliana has also had 2 brain surgeries. With Physical & Occupational therapy from 6 months of age, she has gained skills, lost skills and is now relearning at her own pace. So proud of my Princess 💜

(x2)

05/08/2026

A tonic-clonic seizure is often described as equivalent to running a marathon while lifting weights due to the extreme physical exertion, intense muscle contractions, and total exhaustion it causes.

This comparison highlights the massive energy expenditure, muscle damage, and long recovery period, which can include muscle weakness and soreness for days, or even weeks, similar to severe athletic overtraining.

Now imagine 7 of these tonic clonic seizures and an uncountable myoclonic seizures in less than a 12hr span?

04/30/2026

Thank you for welcoming Eliana with open arms, a goodie bag and her first Lei 🌺 The entire crew knew her name, welcomed us at the gate and made sure she had a great flight!

04/29/2026

Just a mom taking her non-epileptic son to baseball practice. changes the siblings lives too. TRIGGER WARNING‼️ SEIZURE SHOWN IN VIDEO

04/28/2026

This is truly a breathtaking experience. The emotions, the grief, the love, the hope….

You must experience this at least once in your lifetime 💜

🦋 Wings of Hope returns on June 27, 2026, during the DSF Family & Professional Conference in Orlando, Florida.

In a recent Decoding Dravet blog, Campaign Director Misty Ried shares more about this meaningful butterfly release and what it represents for the Dravet community: a moment to honor our children, celebrate hope, and remember loved ones we hold in our hearts. 💜

You can sponsor a butterfly for $25 in honor or in memory of someone meaningful to you. Each butterfly will be part of a mass release during the conference, creating a beautiful tribute filled with love, remembrance, unity, and hope.

The deadline to sponsor a butterfly is May 27.

Whether you will be with us in Orlando or watching from afar on Facebook Live, we hope you will take part in this special tradition.

🦋 Read Misty’s blog and sponsor your butterfly →

https://dravetfoundation.org/wings-of-hope-a-butterfly-release-to-honor-remember-and-celebrate

04/20/2026

Your Voice Matters 💜

📣 Parents and caregivers, there is still time to share your feedback.

The DSF 2026 Family and Caregiver Annual Survey is open, and we want to hear from families as we work to better understand what support is needed most. 💜

What you share helps DSF identify gaps, shape future programs and resources, and better respond to the needs of our community. The more families who participate, the clearer the picture becomes.

⏳ Please take a few minutes to complete the survey by Friday, April 24.

🔗 https://www.surveymonkey.com/r/DSF2026survey

04/19/2026

Hi Grandpa, We were just in Hawaii & felt your presence every single day. Abuela showed us all the places you lived in Hawaii and the best stories. I know it was you who made sure I stayed safe and had the best time of my life while in Hawaii; thank you🥹
I hope today you’re having so much fun celebrating your birthday 🎂 I love you…. (Your Grandaughter)

Happy Birthday to my forever Guardian Angel 🪽

🎗 🌺

04/17/2026

My Mental Health as her mom & caregiver has NEVER been the same since the day she was diagnosed 💔… But I’m working on it.

Dravet Syndrome doesn’t only affect those diagnosed - it deeply impacts the caregivers and families who support them every day.

DSF was proud to be part of this new publication that underscores the mental health burden experienced by caregivers of those with Dravet syndrome - from increased stress and emotional strain to the continuous demands of care. Recognizing and addressing caregiver well-being is essential. Not only for their health, but for the quality of care they are able to provide.

🔗 Read the full study → https://onlinelibrary.wiley.com/doi/full/10.1002/epi.70171

04/12/2026

New Merch💜✨

New 2026 shirt designs are here for Dravet Syndrome Awareness Month this June 💜🦋

We can’t wait to see our community wearing them all month long.

If you want a meaningful way to show your support during Awareness Month, these shirts are a simple way to raise awareness, start conversations, and help fund progress for families living with Dravet syndrome.

Wear yours to an event, out in your community, or throughout June as a visible show of support.

These designs are only available during this limited-time campaign, so be sure to order by May 16 to receive yours in time for June.

Get yours before they’re gone and wear purple with purpose 💜

🔗 http://bonfire.com/june-is-dravet-syndrome-awareness-month