Media Submissions for Dravet Stories Page

Members of the DSF Family Network are welcome to share their personal journey with Dravet syndrome on our website, by filling out the form below.

We believe that personal stories are powerful tools for raising awareness and fostering a deeper understanding of Dravet syndrome. By sharing the experiences of individuals and their families affected by this rare disease, we can put a face to the diagnosis and highlight the realities, challenges, and triumphs that come with it.

DSF Family Network members who are interested in sharing their loved one’s story on our Dravet Stories webpage can fill out the form below and upload a hi-res photo file in jpg or png format. If someone other than the patient’s legal guardian is submitting a story, parental or legal guardian approval is required prior to submission.

Thank you for helping us shine a light on Dravet syndrome – one story at a time.

Questions on whether your photo is hi-res? Please read our guidelines at this link.

Your Name(Required)

First Last

Email(Required)

Child's Name(Required)

Photos

Please upload photos in jpg or png format. Please try to include your child's last name as part of the file name (i.e., smith_photo_1.jpeg)

Drop files here or

Max. file size: 128 MB.

Tell us about yourself and the Dravet patient in your life

Examples: tell us about your family, where you live, what you like to do, what brings you joy, etc.

When did the patient's seizures begin?

What were the early days of the disease like for the patient and family? What led to a diagnosis?

What is your hope for the future your loved one? For the Dravet community?

What advice do you have for newly diagnosed Dravet families?

Were you the recipient of a Patient Assistance Grant?

If so, please share how this grant has helped the Dravet patient in your life.

Signature(Required)

Media Submission Permission & Release: By submitting my photo(s) and story to Dravet Syndrome Foundation (DSF), I grant permission to DSF and its agents, volunteers, or employees to use, reproduce, and publish these materials—whether they feature me, my child, or any individual for whom I am authorized to give consent—for use in DSF’s brochures, newsletters, display boards, social media accounts, websites, publications, and other organizational materials, without notifying me. I understand that DSF may choose not to use my media at this time, but may do so at its discretion in the future. I acknowledge that once my photo(s) and story are posted by DSF on its website, social media, or in digital/print publications, they may be viewed, shared, or downloaded by anyone using a computer, phone, or other device. Therefore, I agree to indemnify and hold harmless DSF, its agents, volunteers, and employees from any claims. I waive and release any and all claims against DSF and its contractors or licensees relating to my name, likeness, the submitted media, and their uses or distribution in any form or media, including, without limitation, any rights and claims relating to royalties or compensation, editing, alteration, copyright, distribution, misappropriation, libel, false light, rights of privacy and/or publicity. DSF reserves the right to discontinue use of submitted media at any time without notice. If you wish to request removal of your or your child’s photo(s) or story from DSF’s website, publications, or social media, please submit a written request by email to info@dravetfoundation.org. I have read this release and fully understand its contents, meaning, and impact.

The information collected by Dravet Syndrome The information collected by Dravet Syndrome Foundation will not be sold or distributed outside of DSF and is used solely to verify identity and assist with communication. Questions or concerns can be directed to our team.

Media Submissions for Dravet Stories Page

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