KCNT1 Slack Epilepsy Foundation Inc

My name is Jen Jensen and I am Bodie’s grandmother (“Mimi”). Bodie has been diagnosed with KCNT1 Epilepsy. This is a multi seizure disorder. It is a rare genetic disorder that does not respond to anti-seizure medications. Due to budget cuts, research was scaled back. Monies donated to this site will be used by the KCNT1 Epilepsy Foundation to further research, find new treatments and improve the lives of babies like Bodie and their families. Please consider donating. Thank you for your consideration!

Andrew son was diagnosed with KCNT1 epilepsy in 2017 at 6 months old. It has been life-altering and turned our world upside-down.

I ask that you consider a donation to the KCNT1 foundation. We are close to getting an antisense ologonucleotide (a form of gene therapy) for our son and other children with KCNT1 epilepsy.

This is something I would never have dreamed possible when he was first diagnosed. The doctors told us there was no cure and to “take him home and love him” as most of these children die before age 3.

But here he is - a big 6 year old boy! Unfortunately, he is still at the developmental age of a 6 month old. Epilepsy has stolen a lot from him and from our entire family. We hope to give some of this back to him using gene therapy: to “fix the bad part of his DNA” as his older brother Colin likes to explain.

Please help us with a donation. I made this video to show what life has been like for Andrew and myself. My personal goal is to raise $100,000 this year for the foundation. I understand that’s a huge amount, but the cost of developing gene therapy is in the millions. There are already several therapies for KCNT1 epilepsy in the “pipeline.” Your donation will help to bring these treatments to our children who desperately need them.

Please help us with a donation.

www.kcnt1epilepsy.org

In honor of Jennie Collea Billman's birthday this year, I would love to invite you to contribute to the KCNT1 Epilepsy Foundation. November is Epilepsy Awareness Month, and Jennie's nephew Andrew was born with KCNT1, a rare and severe form of epilepsy.

The KCNT1 Epilepsy Foundation's mission is to support research and drug development efforts focused on finding a cure for KCNT1-related epilepsy. It also supports the KCNT1 community with educational resources and the latest research information.

Andrew is 4 years old now and cannot walk or talk, and the KCNT1 Epilepsy Foundation was established to help little Warriors like him. Your donations will support research, drug development, and educational programs that are so critical to the futures of children and families impacted by this disease.

Any support is greatly appreciated. And thank you!!

Please don't mention this fundraiser to Jennie before Thursday night (11/4). It's meant to be a surprise!

Find more information at this link: https://kcnt1epilepsy.org/