Eliana: Dravet Syndrome Warrior

03/16/2026

To everyone fighting silent battles remember to love yourself just the way Eliana does. Priceless moments of her taking the time to hug herself during the silence of a car ride. We can learn so much from her innocence & strength 💜✨

And if nobody said it today, YOU ARE LOVED & PERFECT IN EVERY WAY!

03/14/2026

When you see this candle, it means that our Dravet Community has lost another sweet soul: 2yr old Cody. Your beautiful and contagious smile will be missed!!💙💔

Sending prayers and our condolences to the family as they face every parent’s worst nightmare ….It’s not fair! Our community NEEDS A CURE!

Learn how to support a grieving family or access our DSF Bereavement Support here:
https://dravetfoundation.org/caregiver-resources/bereavement/

03/11/2026

💜✨💜✨

Every year, DSF presents Ciara’s Spirit of Hope Award to honor parents, siblings, and volunteers whose service to our community is truly outstanding and inspiring. 💜

First established in 2010, this award reflects the heart of DSF: families and supporters showing up for one another, again and again. In memory of Ciara O’Driscoll, we continue this tradition by recognizing community members who go above and beyond through their dedication and impact.

We know so many in this community quietly carry others through hard days—and we want to help shine a light on them.

If there’s a parent, sibling, or volunteer who has made a meaningful difference through service to DSF, please nominate them for this year’s award.

🗓️ Nominations are due Friday, May 8.
👉 https://dravetfoundation.org/events/ciaras-spirit-of-hope-award/

03/09/2026

When you see this candle, it means that our Dravet Community has lost another sweet soul: 15 yr old Mason. Fly high and continue to be the coolest superhero ever!!💙💔

Sending prayers and our condolences to the family as they face every parent’s worst nightmare ….It’s not fair! Our community NEEDS A CURE!

Learn how to support a grieving family or access our DSF Bereavement Support here:
https://dravetfoundation.org/caregiver-resources/bereavement/

03/05/2026

Keep Fighting 💜✨

March is Women’s History Month.

Disabled women have shaped history, advanced civil rights, challenged artistic norms and transformed how we understand disability.

From Judy Heumann’s leadership in the disability rights movement to Harriet Tubman’s abolitionist legacy, from Frida Kahlo’s groundbreaking art to Alice Wong’s impact on disability storytelling and advocacy, their contributions continue to influence generations.

Representation matters. History includes disabled women. Who else would you add to this list? Let us know in the comments.

Image description: Graphic titled “Disabled Women Who Shaped History” with NDI logo in the top right corner. The slide features four women with brief biographies and photos: Judy Heumann (1947–2023), disability rights activist and wheelchair user who helped lead the 504 Sit-in and advance the Americans with Disabilities Act; Harriet Tubman (c. 1822–1913), abolitionist and political activist who sustained a traumatic brain injury and likely lived with epilepsy; Frida Kahlo (1907–1954), Mexican painter who lived with chronic pain and mobility impairments; and Alice Wong (1974–2025), disability rights activist with spinal muscular atrophy and founder of the Disability Visibility Project. Portrait images of each woman appear below their biographies.

03/03/2026

Thank you for these memorable pencils that we were able to hand out at in Washington DC to ensure Eliana’s story is remembered. We appreciate you for these last minute order fulfillment & quick turnaround 💜✨

03/02/2026

💜💜💜Hello March 💜💜💜

📣 Upcoming Events - March

March is packed with ways to plug into the Dravet community—whether you’re looking to take action, get updates, or simply feel a little less alone. 💜 Save these dates! You’re part of what keeps this community moving forward.

💸 Give Up Your Cup (Mar 1–31)
https://GiveUpYourCup.org

👐 Grandparent & Extended Family Virtual Meetup (Mon, Mar 9)
https://tr.ee/DSF-GEMS

🏛️ State of the Foundation Town Hall (Thu, Mar 12)
https://tr.ee/DSF-TownHall

✨ Battle for a Breakthrough Gala — Atlanta, GA (Sat, Mar 14)
https://tr.ee/DSF-ATL-Gala

🤝 Chat & Connect Caregiver Virtual Meetups (Mon, Mar 30)
AM: https://tr.ee/ChatConnect-Day
PM: https://tr.ee/ChatConnect-Eve

Join us and share this post with someone who might join you!

02/28/2026

This week at Rare Disease Week, I had the honor of speaking on a panel about genetic testing and sequencing with —and shared how it ultimately changed my daughter Eliana’s life & finally gave us something to fight!

But our journey to that diagnosis was anything but easy.

While my daughter was fighting for her life, I was dismissed. I was called “crazy.” I was referred to a psychiatrist for possible postpartum depression instead of being heard as a mother who knew something was terribly wrong.

It took 11 hospital visits.
It took a life-altering intubation.
It took nearly losing her.

Only then did we receive the diagnosis: Dravet Syndrome.

A rare disease affects fewer than 200,000 people in the United States.
Dravet Syndrome impacts only about 1.5 to 6.5 people per 100,000.

Rare doesn’t mean insignificant.
Rare doesn’t mean invisible.
Rare families deserve answers.

And I will never stop advocating for them.

02/28/2026

is a rare, devastating disease that often starts in infancy and results in severe seizures.

With support from National Institutes of Health (NIH), Washington Research Foundation, and Dravet Syndrome Foundation, we're testing a potential gene therapy that could bring relief to patients and their families.

02/21/2026

I hate Dravet Syndrome‼️

02/21/2026

Caregivers are the strongest individuals in the world! But stop saying we are “made” or “chosen” for this journey. We hurt too. We break too. We become mentally & emotionally drained too. If you have a Caregiver in you life, take a moment to Love on them & Pray for them too 💜🙏

02/20/2026

Dravet Syndrome is a Rare Disease. Eliana was diagnosed with this Rare Disease in 2020. Every day of her life is a miracle; There Is No Cure 💔