International SCN8A Alliance/Wishes for Elliott

Advancing SCN8A Research

aka International SCN8A Alliance   |   WASHINGTON, DC   |  www.SCN8AAlliance.org

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 info

2019

President & CEO

Gabrielle Conecker MPH

Executive Director

JayEtta Hecker

Main address

1234 Crittenden St NW

WASHINGTON, DC 20011 USA

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EIN

47-1822559

NTEE code info

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

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Our programs

SOURCE: Self-reported by organization

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).

Population(s) Served
Children and youth
People with diseases and illnesses

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.

Population(s) Served
Infants and toddlers
People with diseases and illnesses

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.

Population(s) Served
Children and youth
People with disabilities
People with diseases and illnesses

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our goal is to aggressively work with families and all relevant stakeholder to find life-altering treatments, and ultimately cures, for those living with SCN8A and related disorders.

- Work collaboratively with families to document and

Financials

International SCN8A Alliance/Wishes for Elliott

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Operations

The people, governance practices, and partners that make the organization tick.

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International SCN8A Alliance/Wishes for Elliott

Board of directors
as of 04/09/2022
SOURCE: Self-reported by organization
Board chair

JayEtta Hecker

Organizational demographics

SOURCE: Self-reported; last updated 12/14/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data