The first meeting to present the Community Action Network to leaders in the epilepsy community took place in Indiana in early February. Individuals from throughout the state gathered in Indianapolis to hear about the Epilepsy Foundation's new program. Phil Gattone, President and CEO of the foundation, and Jon shared a new vision of how people will come together as volunteers and create real change across the country. They heard compelling, personal stories from those who attended which were both emotional and inspirational. There was a lot of excitement in the room about all that is to come.
To read more about the meeting, click here to read Jon's article on epilepsy.com
We are so happy to see Livy using her Tobii Dynavox Eye Gaze system! We are amazed at this technology and the potential it has for communication. Livy will need plenty of time to practice but who knows what she will be able to do with it in the future. Click here to watch the video of Livy in action.
At the end of February, we took a trip to present at the Epilepsy Foundation of Indiana's 1920's themed Roaring Toward A Cure gala. It was a beautiful and inspiring evening. We met many new friends.
The three of us shared our story and Jon spoke about the Community Action Network. Livy couldn't attend but she was with us in spirit. There are so many committed people in the epilepsy community in Indiana and we look forward to building a stronger Foundation in order to help individuals and families across the state.
We were lucky enough to have someone video our presentation. We combined it with some pictures from the evening so you can see the wonderful event. Please click here to watch.
The Epilepsy Foundation of Florida named Hailey and Jon their Wednesday Warriors in early February. We are so grateful for the support they provide to thousands of Floridians.
The Foundation says, ""Don't Give Up. Give Back." Livy's Lemonade has raised thousands of dollars for epilepsy! This family, including Livy's twin sister, has made a promise to fight epilepsy, and fight for Livy! Warriors if we've ever seen one!"
And we will continue to fight, every day, until not another moment is lost to seizures.
The Hearty Hooligans Family
As a mom of a special needs child, Allison often hears, "I don't know how you do it". It is challenging, yes, but Allison has learned so much about perspective.
She heard about the Hartley family some time ago, but they have recently been in the news because of the Zika virus. Gwen, the mom of these two sweethearts, was recently interviewed on NPR and we were so inspired by her story. Her daughters, Claire and Lola, have microcephaly, a congenital condition associated with incomplete brain development and an abnormal smallness of the head. There has been some speculation about the connection of pregnant women with the Zika virus having babies being born with microcephaly.
We have included the link below to Gwen's blog. It is moms like her that give us so much hope and make us so appreciative of our lives. She ends one of her posts in the most wonderful way possible...
"Lastly, please do not feel sorry for our family. Many tell me how sad they are for the girls and us. We want you to know that we are happy, and we love our lives! Our three children have changed us by being exactly who they are. Is it hard sometimes? Absolutely. Do I have down days/weeks? Damn right I do (Go read my blog. Sorry for being a Debbie Downer over there lately!). But these sad times never last for long. I have way too much to be happy about. Every single day with our girls is a gift. I just pray that we're given lots more TIME with both of them. I want to make more memories & take lots of pictures & capture all this love and joy to last me for the rest of my life because my kids & my family are what strengthens ME."
Click here to read more about this wonderful family.
In hard times, focus on others instead of yourself.
Don't Give Up. Give Back.™
Thanks so much!
Jon, Allison, Hailey and Livy
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