KCNT1 Epilepsy Foundation
PROGRAMS
Research and Development
Fund Research: Dedicate resources to propel scientific research in the field of KCNT1 pediatric epilepsy, encompassing both pre-clinical and clinical studies. Fund International Patient Registry: Create and sustain an international patient registry to gather comprehensive data, thereby enhancing our understanding of the condition and facilitating the development of more effective treatments. Foster Collaborations: Actively encourage and facilitate partnerships and research collaborations between scientists, pharmaceutical companies, and other professional groups actively engaged in KCNT1-related and other genetic epilepsy projects. Biological Specimen Collection: Financially support the collection and secure storage of patient biological samples, a critical foundation for advancing research and progressing potential therapies. Cell Model Development: Provide funding to enable the creation and application of cellular models, enhancing our ability to comprehensively study KCNT1 and advance the development of potential treatments.
As a result of initiating new collaborations and the developing of research assets which are made available to scientists and drug developers, we have doubled the number of research teams interested in studying and developing treatments for KCNT1 truly giving hope to families who once had none.
Family Support: Engage, Educate, and Support
The KCNT1 Foundation actively seeks to engage, educate and support the parent and primary caregiver for persons effected by the KCNT1 mutation. In addition to maintaining an updated website and consistently posting information and updates to social media, we encourage them to sign up for our Family Contact List. This information is used to keep them informed of research and clinical trial opportunities, to share educational resources, as well as to help families connect with each other. Their information will never be shared with third parties of any kind and will be only be used for communication purposes.
Clinician Education: Offer educational resources and support for clinicians, ensuring they stay up to date with the latest research and treatment options.
Family Support: Provide emotional and educational support for families dealing with KCNT1 pediatric epilepsy, helping them navigate challenges and access resources.
Newly Diagnosed Point of Contact: Serve as a primary point of contact and guidance for families who have recently received a KCNT1 diagnosis, connecting them with resources and experts.
Community Engagement: Engage the broader community in participation for critical studies and research, fostering a sense of shared responsibility and involvement.
Program: Outreach & Awareness
The advocacy efforts of The KCNT1 foundation include maintaining connection and communication with leaders in the research industry and legislators at the local, state and national levels. We must also pursue and maintain connections with businesses, individuals and organizations who are ready willing and able to both donate to, advocate for and support the mission and vision of our Foundation.
Stakeholder Representation: Act as the voice and representative for the KCNT1 community when engaging with key stakeholders such as healthcare institutions, government agencies, and pharmaceutical companies.
Awareness and Marketing: Allocate resources to raise awareness about KCNT1 pediatric epilepsy among the general public, promoting understanding and empathy.
Philanthropic Fundraising: Develop and execute fundraising campaigns to secure financial support from philanthropic individuals and organizations.
Attract Research and Biotech Interest: Promote and educate the research and biotech sectors about the importance of KCNT1 research, aiming to attract further interest and investment in the cause.
CONTACT
KCNT1 Epilepsy Foundation
32531 N Scottsdale
Suite 105-530
Scottsdale, Arizona 85266
Sarah Drislane
Phone: (949)268-9770