It’s been a few months since my last blog. First, I want to sincerely thank the Anita Kaufman Foundation for all that they do for the Epilepsy community. They have truly been there for me in the sense of helping me find my purpose again, and that is no easy feat. My last post in the Fall, I talked about how I was ready to take on the world of Advocacy for Epilepsy, but I just wasn’t sure how to do it. The Anita Kaufman Foundation has been more than generous with their education materials. Unfortunately, with the ebbs and flows of CO-vid, face to face presentations have been a challenge. However, it was suggested through them that I begin a Facebook Group, and that’s exactly what I did. The name of the group is Epilepsy: Picking Up The Pieces, and any individual with Epilepsy, caregivers, or anyone that is genuinely interested in learning more about Epilepsy is invited to join! I cordially invite you to do so! The focus is on how Epilepsy is so much more than just seizures with a special emphasis on Depression. I’ve only had it open since November and have already had some great connections made. I’m learning about some of the multiple seizure disorders that I did not know about before such as CDKL5 and Lennox-Gastaut Syndrome. Learning about the medical conditions through the eyes of the family that fights these every day is a priceless lesson. I’m also meeting some great families and individuals that connect with a lot of the things I share.
One of the greatest things about the group, is getting the feedback from those that are not directly impacted by Epilepsy every day, and their positive reactions, such as, “thank you for sharing today, I wasn’t aware of that.” To me, spreading the awareness, is one of the epic parts of my purpose.
Through outreach to the community and Zoom meetings, new connections are beginning to happen with Advocacy linking Epilepsy to Suicide Prevention. This is near and dear to my heart, and is greatly needed. This project is brand new in my community and I hope to continue to bring ongoing updates about it as I feel very passionate about this journey.
I LOVE the sense of purpose I am receiving through doing this Facebook group, and I pray that the opportunities continue to keep growing.
Below are a few pictures of things that have gone on within the last few months.
I hope you all have a wonderful 2022!
"If you have a Special Brother," written by Carson Froy
This little girl is holding a copy of a book called, "If you have a Special Brother," written by Carson Froy. The author of the book is just 14 years old and wrote it about his 7 year old brother, Tanner who is diagnosed with CDKL-5, a very severe form of Epilepsy. This family lives in my county, and when I read about Carson writing the book, getting it published, and raising money for the International Foundation for CDKL5 Research Foundation, I couldn't resist. I purchased 10 of the books and passed them out to the first 10 families that requested a copy.