Hope Can’t Wait…
Neither Can Our Kids.
Andrew is 6 years old and suffers from a lethal form of genetic epilepsy. He is still unable to walk or talk — and has a 50% chance he will not make it to his 10th birthday. Unless we succeed in developing a targeted therapy, kids like Andrew will not develop, and will suffer a lifetime of seizures.
We invite you to be part of the solution and help close our funding gap.
You can keep our research initiatives on track so that we can improve the lives of these children in the short term, and in the long term, give back to Andrew and other KCNT1 warriors, everything this disease has stolen from them.
We ask for your support to keep our mission moving forward.
The KCNT1 Epilepsy Foundation is a 501(c)(3) charitable organization so contributions may be deducted up to 50 percent of adjusted gross income.
When Andrew finds his voice, I promise to have him call and thank you for your support.
With Gratitude,
Have a question? Email us!
The donation form allows many types of payment methods including PayPal, Venmo and the ability to give through your Donor Advised Fund (DAF). You can pay by check as well.
To send donation via wire, please contact Sarah@KCNT1Epilepsy.org for details.
Your donation will support breakthroughs in science and save lives
Your support could have a ripple effect.
This is not just about a single child. It is about 500 diagnosed cases around the world. 30,000 undiagnosed cases that three prevalence models have predicted. 500,000 children with a closely related form of genetic epilepsy that preclinical models have demonstrated will respond to the targeted therapies developed for KCNT1. And potentially millions of patients who have suffered traumatic brain injury who share the related mechanism of dysregulation of the protein coded by the KCNT1 gene.
The scale of impact is massive — global really — and there’s every indication to support that breakthroughs in this rare disease space will cross over into broader, more common diseases as well.
Seizures can strike within hours or days of a baby’s birth. Untreated, they most often lead to permanent brain damage – and even death.
With the support of our donors from day 1, we have made tremendous progress. We established an international patient registry, a biobank, and are breaking down silos to accelerate collaborations. Our aggressive outreach efforts are bearing fruit. When the foundation was formed in 2019 there were only two companies working on targeted therapies. Since then, we have initiated, supported, or entered collaborations with 21 additional programs around the world. Our recent virtual Research Roundtable drew 93 participants from 35 institutions. We have aggressively pushed to recruit pharma because drug development is a numbers game. And this is where you can make a difference: Ninety percent of new programs fail — and so we need to continue to build our assets, fund innovative research and increase the probability that one of these efforts will make it across the finish line and prevent another death. Our work is clear. You can be part of this fast-paced journey, drive the science and make a difference in the world.
