The next day, they participated in the Day at the Capitol and spoke to representatives and senators about the importance of providing funding for the Florida Epilepsy Services Program across the state of Florida. The program has a mandate to provide client services for the care and treatment of persons with epilepsy, provide educational programs regarding epilepsy and to promote the prevention of epilepsy. The Epilepsy Foundation of Florida is the largest epilepsy focused organization in the state delivering services to clients in more than 30 counties. 400,000 people in Florida live with epilepsy and Hailey and Jon wanted to let legislatures know why their support is needed.
They had the privilege of speaking with Senator Eleanor Sobel, Representative Janet Cruz, Representative Dan Raulerson, Representative Matt Hudson, Representative Shawn Harrison, Representative David Richardson and Representative James Grant. They also met some wonderful new friends who were advocating for those in the epilepsy community as well.
Jon is making exciting progress on the Community Action Network for the Epilepsy Foundation. The logo has been completed and people are beginning to get involved.
We are very excited to announce that we will be creating a group in Tampa Bay! Our group will be focusing on creating epilepsy awareness, informing people where they can find educational tools and services online, holding events, participating in innovation and promoting legislative advocacy.
Our first meeting will take place on March 12th from 3:00 - 4:00 at the Clearwater Countryside Library located at 2642 Sabal Springs Dr, Clearwater, FL 33761. If you would like to attend, please contact us. We would be happy to send you more information about the Community Action Network and how it will help to bring people together to make a difference for those living with epilepsy and their families.
We are happy to tell everyone that Livy's Tobii Dynavox Eye Gaze system has arrived! We received it over the holidays and it made a wonderful gift for Livy to unwrap. She needed a little help and Hailey was more than willing to lend a hand as you can see in this video.
There will definitely be a learning curve for Livy to use the technology (as well as mom and dad) but we have support from her therapist and will be working with Tobii to make sure we get it right. We look forward to sharing Livy's progress over the coming weeks and months.
We want to say a very big thank you to Adrian Paul and the rest of the team at The Peace Fund and all those who contributed during the fundraising. Our family is grateful for your amazing support!
Mom Adopts Hospice Babies No One Else Wants
Loving these children, knowing that their time on earth will be short, is the work of a true angel! Such is the life of Cori Slachert, a former nurse caring for terminally ill children no one else wants. We are inspired by her selflessness and willingness to become emotionally involved despite knowing the outcome. To read the story in entirety, please click here.
Each of us can change someone's life. It is in the smallest acts of kindness where our humanity is revealed.
Don't Give Up. Give Back.™
Thanks so much!
Jon, Allison, Hailey and Livy
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