Our Role

Our Mission

Our mission is to educate and to advance research leading to treatments or a cure for patients living with the genetic disorder KCNQ2 epileptic encephalopathy.

Our Story

In 2011, Scotty Sims founded a parent support group to bring together parents of those affected by KCNQ2 developmental and epileptic encephalopathy. She was motivated by the lack of information available when her daughter was diagnosed with the rare disease. Scotty’s effort clearly met a need as families affected by KCNQ2 began making personal connections.

Shortly after, some of the families identified the need to formalize an organization to advocate for the development of research and treatment options for those affected by KCNQ2. Three families formed an action group to pursue the matter. The KCNQ2 Cure Alliance incorporated in Denver in September 2014. In March 2015 the KCNQ2 Cure Alliance received confirmation of its tax-exempt charitable status under Section 501(c) (3) of the Internal Revenue Code.

About Us

KCNQ2 Cure Alliance provides support for those whose loved ones are diagnosed with KCNQ2 developmental and epileptic encephalopathy, while working with medical and scientific experts, biopharmaceutical companies, our scientific advisory board and our board of directors to advance treatments that could improve the lives of KCNQ2 patients.

KCNQ2 Cure Alliance is a 501(c)3 non-profit organization (EIN #47-1810644). All donations are tax-deductible to the extent the law allows. All donations will receive an acknowledgment letter to be used as a receipt of your donation.

You can read our privacy policy here.

Financial Statements

Letter of Determination for 501(c)(3)

2018 990 IRS Statement

2018 Financial Audit

We take our responsibility to our donors and supporters seriously, and are extremely conscientious with the donations entrusted to our care. We are a 100% volunteer-run organization, allowing KCNQ2 Cure to maximize our donors’ contributions to what matters most: research!