This non profit is well run and completely dedicated to helping these children with KCNT! Epilepsy. I have been involved with this foundation for over a year, and have only good this to say about the staff, leadership and their vission.
Since our son's diagnosis in 2021, this foundation has been a beacon of hope and a source of invaluable information. The information, guidance, and resources offered have been a tremendous help in navigating the challenges that come with our son's diagnosis of KCNT1 related epilepsy. Their resources have not only educated us but also empowered us to make informed decisions about his care and wellbeing. In addition to the practical information, this foundation has also created a sense of community and connection with other families. Knowing that we are not alone in this journey is comforting, and this foundation has played a significant role in fostering a supportive network for families like ours. I am deeply grateful for their dedication to making our journey more manageable, more informed, and filled with hope.
For a smaller foundation, the KCNT1 Slack Epilepsy Foundation has a large impact on the families it serves. I am continually impressed by the amount of work the team is able to accomplish. Everything is achieved through the dedication of the staff, and all the volunteers who give their time to supporting this cause. I feel lucky to be involved with this organization that I know will keep working tirelessly to find a treatment, and ultimately a cure, for this disease.
The KCNT1 Foundation has made amazing progress in getting a lot of attention on this rare form of epilepsy. Hopefully this will lead to progress in finding treatments for this condition.
Ethan is our KCNT1 “Silly Angel.” He came to us with broken wings. Every day we do our best to give him a quality of life that all human. beings deserve. Truthfully, it has been we who have found strength and hope through him. The KCNT1 Epilepsy Foundation is the place where we can rest our weary souls (through education and encouragement) so that we can further minister to our Silly Angel
The KCNT1 Foundation has been a excellent resource and support with my daughters recent diagnosis. I was so impressed by what the foundation is doing that I excepted the opportunity to become a Parent Support Specialist. With such a rare diagnosis the ability to have a community to share support and advocate for our kids is a great blessing. From the webinars, support group and speaking with the foundation community they are special people that work very hard to bring awareness and better care for our kids.
This is one of the most organized and dedicated teams I've been around. They are solely focused on advancing their mission and I'm proud to support their efforts to find a cure.
I am a father of a child that passed away from complications driven by KCNT1 epilepsy. This foundation did not exist when my daughter was alive, when we were struggling to find any resources and community. When I happened upon this organization a few years after she had passed, I reached out and joined without hesitation.
I've been with the foundation in some capacity or other since January 2023. While it's still a small team, the organization is well run and is clear on its strategic vision and objectives. It's a given that resources and funding are not in abundant supply, yet the KCNT1 Epilepsy Foundation continues to find creative ways to be effective. The journey ahead for families diagnosed with this devastating disease will be challenging, but I am confident this foundation will provide optimism for a more hopeful future.
To the general public--please send any families you know impacted with KCNT1 to this foundation!
This organization is incredible. My son has KCNT1 Epilepsy. It is such a rare condition. It is hard to find support, even among doctors, because many people just don't know about this type of severe epilepsy. We live it every day. My son will never walk, talk, or even hold his head up. He suffers every day with dozens of seizures. There are no medications that will take away his suffering completely. Without the work of the KCNT1 Slack Epilepsy Foundation, there would probably never be any type of treatment. But we have hope.
I got involved in this foundation through a friend, who has a relative with Kcnt1 epilepsy. I was so moved by the commitment from all the founders and families involved in this cause. Kcnt1 is such a rare form of epilepsy that traditional anticonvulsant medications do not help the patients that have this disease. Their dedication to getting the word out about this rare form of epilepsy, gathering more families that are affected, as well as trying to get physicians, researchers and pharmaceutical companies on board for a cure is inspirational. And their website is amazing! Please consider Kcnt1 Slack Epilepsy foundation for GreatNonprofit recognition.
Taking care of a child with KCNT1 epilepsy is extremely challenging in so many ways. Having the KCNT1 Foundation makes it just a bit easier. And for that I am forever grateful. In just a few years they have accomplished so much. They are now a resource for new parents after you get a diagnosis. Instead of being given a piece of paper with a scary diagnosis and little information you are connected to a community that will support you on this journey. They have also compiled a scientific advisory board and are working with researchers across the country to find treatments that will make a significant impact on our kids lives. That hope is priceless.
This charity is near and dear to my heart. They are extraordinary at supporting families with KCNT1 Epilepsy. They are working very hard to fund important ground breaking research that will help find treatments for this genetic epilepsy. The executive director is passionate about her job. She has been very vital to the foundation. I am so overwhelmingly impressed with their mission that I have accepted the role of Canadian Ambassador for the foundation to assist welcoming new families and helping them navigate this very rare disease. Education is also paramount with the foundation. Ensuring members of the medical field know about this epilepsy is crucial for early diagnosis. Educating the general public to increase awareness of who they are and the importance of the work they do is a key function of the foundation and its members. I believe this foundation is vital for new families as they navigate a whole new world. I chose volunteer as my role but I am also mom to a 25yr old KCNT1 warrior and very proud to be!!