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Andrew’s fight against epilepsy

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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.




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    Organizer

    Lisa West
    Organizer
    Newport Beach, CA
    KCNT1 Slack Epilepsy Foundation Inc
    Beneficiary

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