Meet Ryan Addison of Callie’s Cause in Malibu

Today we’d like to introduce you to Ryan Addison.

Thanks for sharing your story with us Ryan. So, let’s start at the beginning and we can move on from there.
When our daughter was eight months old she had her first seizure that was thought to be febrile. Then the seizures kept happening every 4 weeks with 2 hours being her longest seizure. After many opinions and testing it was determined our daughter Callie had Dravet Syndrome. So we started the nonprofit, Callie’s Cause as a way to get epilepsy awareness out there. It was also very therapeutic for us too to be able to give and help when you feel like in the moment of your daughter seizing you can’t do anything to stop it. https://www.calliescause.org/

Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
The road has been very bumpy and there is no cure at this time for her disease. We deal with seizures on a daily basis, along with cognitive delays and behavioral issues. In the beginning, we were full head of steam planning event after event to raise money for the nonprofit. Then there was a point where we had to get centered and focus on us as a family with a special needs kid. Her seizures were getting worse and we needed to take care of her and our family unit.Although we still find time to support and donate to epilepsy research through Callie’s Cause. Some of the other struggles is to keep our life as normal as possible. We also have a ten year old son that has seen some horrific scenes with his sister’s disability. So we are always cognizant of that. As parents, we have dealt with an incredible amount of anxiety and PTSD (Post Traumatic Stress Disorder) which actually continuous but I call it CTSD (Continuous Traumatic Stress Disorder).

Callie’s Cause – what should we know? What do you guys do best? What sets you apart from others?
We are a nonprofit that supports epilepsy awareness and research. I think Callie’s Cause is known for being a grassroots organization brought on by a traumatic medical condition. First we are most proud of our daughter Callie, she is a warrior. We are also proud of our family, friends and community that have really stepped up to get Callie’s Cause out there. As far as what sets us apart, in a weird way maybe nothing. We aren’t in a competition to set us apart. We are here with other epilepsy groups to support each other and research to hopefully find a cure for Dravet.

What moment in your career do you look back most fondly on?
I’ll never forget the night we decided to start a nonprofit. Callie had just had a seizure and was sleeping. Darlene, Tim Ryan, and myself were drinking wine on the couch discussing the seizure like we always do after. It’s like the post vent session on what went well, what happened, and what we could have done differently.  Darlene brought up raising money and donating to help find a cure and then one thing lead to another and a few months later we were paddling across the channel, running a marathon, and paddling home all for Callie’s Cause. Then two days later we were hosting an auction with over 300 people and raised over 100K. That was pretty amazing and how it all started.  The proudest moment in this nonprofit would probably be seeing the community rally behind such a great cause that is so dear to our hearts.

Contact Info:

• Website: calliescause.org
• Phone: 310-918-6569
• Instagram: 4calliescause
• Facebook: Callie’s Cause

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