International SCN8A Alliance/Wishes for Elliott
Advancing SCN8A Research
Mission
We work to accelerate the pace of science on SCN8A in order to bring hope and improved outcomes for all those living with SCN8A and their families. With families at the center of all we do, we work collaboratively with researchers, clinicians, rare disease and epilepsy leadership groups, pharmaceutical companies and beyond to partner on improving treatments for and the quality of life of those living with SCN8A and other rare epilepsies.
Ruling year
2019
President & CEO
Gabrielle Conecker MPH
Executive Director
JayEtta Hecker
Main address
1234 Crittenden St NW
WASHINGTON, DC 20011 USA
EIN
47-1822559
NTEE code
Alliance/Advocacy Organizations (G01)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Communication
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Convening and Hosting Scientific Conferences
Convene and host scientific meetings of leading researchers on SCN8A disorders (independently) and related sodium channelopathies (jointly through partnerships).
Grant making to advance understanding of SCN8A and related disorders
Starting in 2016, Wishes for Elliott innovated a partnership with the American Epilepsy Society allowing our small family organization to make high impact grants to promising young scientists - solidifying their commitment to this rare disease and uncovering the mysteries of this disorder. Five grants have been made to date with more planned in the near future. We also provide bridging funds to allow critical research to continue between major donations.
Development of First Standards of Care for SCN8A
We have gathered pediatric epileptologists and SCN8A caregivers from five continents to work collaboratively, using available data and publications, to develop the first ever consensus guidelines for the diagnosis and treatment of SCN8A epilepsy and related disorders. This a monumental effort that stands to improve the quality of care for all those living with the rare, devastating disorder.
Where we work
External reviews
Financials
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Operations
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International SCN8A Alliance/Wishes for Elliott
Board of directorsas of 12/28/2021
JayEtta Hecker
Organizational demographics
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