Doose Syndrome Epilepsy Alliance

06/30/2024

Sounds like a good webinar if you’re doing keto.

The Charlie Foundation is happy to announce this upcoming webinar hosted by our friends at . Link to register can be found in our profile link under "Upcoming Events".

https://linktr.ee/charliefoundation

03/26/2024

Today is Worldwide Purple Day! for Epilepsy Awareness

Who Are You Wearing Purple for Today?

Visit our website for information on Doose Syndrome
https://doosesyndrome.org/

03/13/2024

What is Doose Syndrome?

Doose syndrome is a rare form of early childhood epilepsy that usually begins between the ages of 1 and 5. The median age at onset is 3 years old. Children are usually developing normally prior to onset. Currently, the cause of this condition is still undetermined.

Visit our website to learn about seizure types, how it's diagnosed, treatment options, and the long term prognosis.

Doose syndrome is a rare form of early childhood epilepsy with no known cause or cure. We exist to improve the quality of life and provide support for families.

01/25/2024

CHOP is having a Virtual Epilepsy Education Day on Sunday January 28.

See agenda here: https://www.chop.edu/events/virtual-epilepsy-education-day-0

Sign-up link: https://events.teams.microsoft.com/.../91690.../registration

Microsoft Virtual Events Powered by Teams

02/10/2022

Seizure Action Plan Toolkit
www.seizureactionplans.org

If your loved one has seizures, please update or get your Seizure Action Plan in place.

Here are some examples:
https://seizureactionplans.org/sap-examples/

If you would like the toolkit, email [email protected]

07/15/2021

We’re thrilled to launch a new VIP Sibling suite of materials designed to support parents & celebrate the remarkable siblings of children living with rare epilepsies like Doose Syndrome. Partnering with Zogenix and 9 other rare epilepsy organizations, we collaborated to create these caring and helpful resources to remind our siblings how important and loved they are.
Learn more at www.VIPsibling.com where you’ll find info, links, and downloadables for parents, caregivers, and their “VIP Sibs." For families in the United States, you can order VIP Sibling support kits on our DSEA website at https://doosesyndrome.org/sib/

04/08/2021

Check out an opportunity to be eligible for a $50 gift card!

👩🏽‍💻The Child Neurology Foundation is gathering data about the experience of families in our community. The information will help better understand the family journey and give our organization more information about how they can best serve you.

Please take 10-15 minutes to complete the Child Neurology Caregiver Needs Assessment at the link below by April 23rd.

🎁People who fill it out successfully will be entered into a drawing for $25 - $50 gift cards.

And those that refer others will be entered again each time they are named as the referrer. In short, the more people you refer the higher your chances of winning!

✅Participate here:

Take this survey powered by surveymonkey.com. Create your own surveys for free.

04/07/2021

If you get a chance. I’m super proud of this project. Been working on it for 6months. If you’ve faced loss this last year, I think it will help heal. It’s free 💜🌱
Rsvp: www.rocktheroc.org/tickets

02/27/2021

We are having a planning meeting today if you’d like to join, or are interested in volunteering for a leadership role.
Today:
12:00pm MST/ 2:00 PM EST

10/01/2020

Complex Trauma Therapy for Parents of Children with Diagnoses.

“Being able to protect yourself doesn’t mean that you have a magic wand and you can make the world a safe place. It’s being able to do some things on your behalf that really honor your ability to be an actor in your own life.”



Let us know your thoughts...

Transforming Trauma

08/12/2020

Recently published research that DSEA collaborated on. It has been years since we have seen anything published on what are your thoughts?

Epilepsy & BehaviorVolume 111, October 2020, 107276EditorialRaring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The EpilepsiesAuthor links open overlay panelIlene PennMillerShow morehttps://doi.org/10.1016/j.yebeh.2020.107276Get rights and c...