Meet The SCN8A Global Leaders Alliance

Bridging Borders - Breaking Boundaries

We are groups of dedicated advocates spread across the globe,
working together to achieve breakthroughs in care of SCN8A.

The International SCN8A Alliance is uniquely positioned to facilitate coordination among those working in SCN8A. We work closely with our partners in order to reduce duplication of efforts and more rapidly advance progress towards improved quality of life.

The International SCN8A Alliance is committed to full transparency. We want to partner with you and we want to share our data with you. If you want to work together to find a cure to SCN8A, let us know!

We bring together all stakeholders – families, clinicians, researchers and pharmaceutical companies to expedite progress – Collaborating For A Cure. 


The 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. We are combining our 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 vision was always a global collaboration of all those working in SCN8A to reduce overlap and expedite the path towards answers for those with SCN8A. The SCN8A Global Leaders Alliance is the  

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

Meet the SCN8A Global Leaders Alliance!

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

We are a caregiver-led organization and put families at the center of all we do. We are determined to break down barriers between families and researchers, clinicians, industry and beyond to ensure that the patient/caregiver voice is heard and that we are supporting and advancing work that is in the best interest of our community. We do this through a range of efforts that brings the science, in easier to understand terms, closer to families and connect other intersted parties to hear, learn from and be guided by those living with SCN8A and their caregivers.

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
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