As a mom of a young lady that is now 16 (?! where did the time go?!) and who has unfortunately suffered from seizures for all but three months of her life, we have encountered many non-profit organizations with a common mission related to Epilepsy.
I want to share these foundations with you. We have found support and community with these groups. And we hope you do as well!
Danny Did Foundation
Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)
The Danny Did Foundation was founded by Chicagoans Mike and Mariann Stanton in January 2010 after the death of their four-year-old son Danny.
The Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind:
- Advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP).
- Enhancing the SUDEP communication model between medical professionals and families afflicted by seizures.
- The mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths. They view these devices as complimentary to medicinal, surgical and dietary measures that are used to treat seizures.
We have one of the seizure detection devices that the Foundation talks about in detail on their website – the SAMi.
The SAMi is a sleep activity monitor for caregivers and individuals who need to watch carefully for unusual movements at night. It helps us detect seizure activity, records and alerts us when one is happening. It has been a life savor … literally!
Take a moment to check out The Danny Did Foundation at www.dannydid.org. Let’s help support all organizations that battle Epilepsy! You can also follow them on Facebook @dannydid and Instagram @danny_did_foundation_.
Learn more about the SAMi Alert System on the website www.sami-alert.com.
And here is a great video demo of the SAMi, so you can see how it works:
I will continue to feature non-profit organizations who have been helpful to Hannah and I on our journey – in hopes that these groups can support you as well.
I would love to hear about organizations that support you. The more we know about the more we can spread the word! Please share your ideas with me via our Contact Us page. Thank you!
~ Heather
Heather Shuker, Co-Founder, Hannahtopia