Jayetta Hecker Email & Phone Number

The International SCN8A Alliance was co-founded by Wishes for Elliott and the Shay Emma Hammer Research Foundation. The Alliance is family-based non-profit focused on advancing research and providing education and support to families affected by SCN8A and other rare and severe developmental and epileptic encephalopathies (DEEs). My daughter Gabi Conecker and I founded Wishes for Elliott when her son Elliott was born with a rare and catastrophic epilepsy. We have focused on accelerating scientific progress by convening scientists, supporting early investigators, and providing education and support for families. The new Alliance cultivates "citizen scientists" empowering families with better understanding of the science and becoming advocates for improved treatments and outcomes. In partnership with 30+ other rare epilepsy groups, we launched DEE-P Connections to provide well curated information for DEE families and providers. We recently launched "The Inchstone Project" to accelerate improved outcome measures for the most severely affected population to assure their gains are measured and considered in evaluating new treatments. We collaborate with leaders of the epilepsy community to promote policies and funding commensurate with the catastrophic economic, health, and social burden associated with the DEEs. We maintain and seek to expand partnerships with all rare epilepsy organizations, researchers, clinicians, pharmaceutical companies, and public health advocates.

Listed skills include Politics, Transportation, Fundraising, Strategy, and 16 others.