HOW YOU CAN HELP

As a small Foundation made up of parents and family members of those affected with KCNT1-related epilepsy, we wear lots of hats. As we find more families and more researchers, more work needs to be done. We welcome your support. There are many ways you can support the Foundation and support the community.

Volunteer

• Awareness: Follow and participate in our social media and our affiliated groups

• Patient advocate/ambassador: Sign up to become the understanding voice for a parent whose child was recently diagnosed

• Photographs: Contribute photos for awareness and fundraising campaigns

• Translator: Help the Foundation speak with newly diagnosed families and help them enroll in the registry

• Other roles: Help with social media, event planning, grant writing, graphic design, web design, fundraising, copywriter, research coordination

Participate in Research

• Sign up your family for our Family Contact list so we can notify you of opportunities

• Enroll your loved one in the international KCNT1 Registry and participate in online surveys

• Participate in the Invitae/Ciitizen digital natural history study (U.S. families only)

• Participate in the Biobank collection by filling out this interest form.

Fundraising

• Make a financial donation or donate other assets

• Start your own fundraising event or Facebook Fundraiser for the Foundation

• Assist the Foundation with fundraising campaigns

• Visit our store for official merchandise

HOW WE WILL USE FUNDING

We are a small foundation, but we have a powerhouse of researchers behind us with clinical and research expertise in KCNT1related epilepsy. To help run our organization and facilitate the research and drug discovery process the Foundation is funding or has plans to fund the following:

• A patient registry hosted on a secure technology platform. The registry allows patients from around the world to input their data and provides the Foundation with a mechanism to contact them when trials become available. We have this now but there are ongoing costs with hosting and managing a registry.

• The development of a biobank of patient blood and tissue samples that will be made available to select researchers to support basic science research and drug discovery. 

• Ongoing data analysis efforts to track clinical characteristics and symptoms of the disease, what medications and therapeutics work, and how this disease effects families over time. This requires the help of clinical psychologists, physicians, data scientists, as well as licensing fees.  

• Funding carefully selected pre-clinical and clinical research projects such as developing iPSC cells for testing new drugs using patient cells, testing potential repurposed drugs on mouse models or KOLF2 cells, or funding a gene editing construct.

• A business infrastructure is required for operating a nonprofit including website hosting, management of the patient registry, employee email and business software licenses, taxes, marketing, and fees for IRBs needed to conduct studies.  

• Grants to academic and private programs in need of initial seed money or ongoing contributions to fund innovative research or promising therapeutics that are being developed for clinical trials.  (Please note that funds are not to be used to purchase equipment. Please note that indirect costs and institutional overhead are not provided.)

• Small Clinical Trials of drugs that are discovered in drug repurposing screenings.
   

As you can see, it is a long road ahead. But for children with KCNT1 related epilepsy there is hope if a targeted therapy can be developed. The Foundation is committed to supporting the clinicians, researchers and drug developers that are close to finding dedicated treatments, and eventually a cure, for our children. Our kids would love to have your support!

Ready to help? Fill Out Our Volunteer Form Below