Meet the Alliance

The SCN8A Alliance is proud to work with our partners to rapidly advance SCN8A research and treatments

The International SCN8A Alliance was created to serve as an umbrella organization to facilitate coordination among those working in SCN8A in order to reduce duplication of efforts and more rapidly advance progress towards improved quality of life and cures. We are focused on
expanding effective alliances between all stakeholders –
families, clinicians, researchers, and pharmaceutical companies. 


Story of the International SCN8A Alliance

Both Wishes for Elliott and the Shay Emma Hammer Research Foundation (SEHRF) have been working continuously since 2014 to help advance research and new treatments for all those struggling with SCN8A epilepsy and related disorders. They are combining their efforts in the new International SCN8A Alliance to better integrate and streamline their varied programs and to provide a clear home for all those working to accelerate better treatments and a cure for SCN8A.

The Alliance was formed by two foundations and combines the well known symbols of our commitment to the community:

The Wishes for Elliott neuron, reflecting
RESEARCH

&

The symbol of the REGISTRY run by SEHRF

to reflect our vision of global collaboration to improve care and treatments for SCN8A

Dr. Hammer first identified the gene as pathogenic in humans just a decade ago posthumously in his daughter Shay. Already a trained genetic researcher, he pivoted his career to focus his efforts, energy, and passions to establishing an international and comprehensive dedicated SCN8A Registry, now launching its 6th annual drive.[1]

[1] The now almost 7-year-old International SCN8A Registry, providing comprehensive longitudinal data on over 200 SCN8A individuals from all over the globe, will continue to operate as scn8a.net and under the non-profit home of the SEHRF.

Gabi Conecker formed Wishes for Elliott from an ICU waiting room – committing to advancing research, collaboration and new treatments for all children with SCN8A. For 7 years Wishes for Elliott has convened scientific meetings, supported grants to eight early investigators in collaboration with the American Epilepsy Society, and helped form regional and variant communities to engage families in both staying abreast of emerging research and driving it in directions to accelerate translation into improved treatments and outcomes.

While Wishes for Elliott and Dr. Hammer have been collaborating for 7 years now – they have decided to join forces to better serve families – sharing the frequently emerging new insights and lessons of the robust longitudinal registry, and collaborating with researchers, clinicians, and industry partners to continue accelerating progress.

The new foundation will continue to host the collaborative Developmental and Epileptic Encephalopathy Project (DEE-P Connections) which focuses on providing coordinated education, empowerment, and community for families with children severely affected by DEEs, including SCN8A.

The Structure of the International SCN8A Alliance

Together Alliance partners are:

  • Promoting progress towards a cure
    Promoting progress towards a cure
  • Promoting the science of SCN8A
    Promoting the science of SCN8A
  • Advancing scientific collaboration
    Advancing scientific collaboration
  • Expanding knowledge with the dedicated SCN8A Registry
    Expanding knowledge with the dedicated SCN8A Registry
  • Expanding communication about SCN8A with and among families
    Expanding communication about SCN8A with and among families