PLATINUM2024

International SCN8A Alliance

Collaborating For A Cure

WASHINGTON, DC   |  https://SCN8AAlliance.org

Mission

Those living with SCN8A and their families are the heartbeat of our mission. Their resilience and hope inspire a network of support, uniting a global team of researchers, clinicians, epilepsy leadership groups, and pharmaceutical companies. Collaborating for a cure, we unite in our mission to advance the science of SCN8A, see improved outcomes and quality of life for everyone touched by SCN8A and other rare epilepsies.

Notes from the nonprofit

We are honored to be serving our community and greatly value your recognition of our commitment to being the best charity we can be for the SCN8A community. It's evaluations like this that keep the industry moving forward by establishing standards for measurement. Your support not only validates our efforts but also directly contributes to advancing SCN8A research, family support, and clinical best practices. Thank you for your work in highlighting quality charities for people to support, and for enabling us to extend our reach and impact.

Ruling year info

2019

President & CEO

Gabrielle Conecker MPH

Chairman of the Board of Directors

JayEtta Hecker

Main address

1234 Crittenden St NW

WASHINGTON, DC 20011 USA

Show more contact info

Formerly known as

Wishes For Elliott

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.

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The International SCN8A Alliance, DEE-P Connections, and The Inchstone Project, which operate under the umbrella of Wishes For Elliott, are catalysts for change in the world of developmental epilepsies. We excel in equipping families with indispensable knowledge through our trailblazing SCN8A Diagnostic & Treatment Guidelines and extensive webinar series. We've amassed 8 years of invaluable longitudinal registry data to inform clinical trials, which we support by sharing key insights about SCN8A and DEEs. Our Resource Center is a comprehensive repository of webinars, tools, and articles, and we lead collaborative initiatives with global industry partners to enhance support and accelerate research. United with families, clinicians, and researchers, we're driving pivotal progress, making strides in interdisciplinary research, and shaping industry and FDA guidelines to better serve those impacted by DEEs.

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?

Grant making to advance understanding of SCN8A and related disorders

Empowering families impacted by SCN8A-related conditions, our research grant program elevates voices and aspirations that drive scientific discovery. Partnering with the American Epilepsy Society, we amplify opportunities for early-career researchers to explore transformative solutions for childhood epilepsy. This collaboration, applauded by the Milken Institute, enhances both organizations' capacity to unlock groundbreaking findings.

Our commitment to 'filling in the gaps' in SCN8A research drive our grant selection. Researchers across academic stages engage in pivotal work, from studying gene modifiers to investigating SUDEP. Each funded project embodies a collective aim to elevate the quality of life for individuals living with SCN8A disorders.

The result is far more than academic progress; it's a beacon of hope for families. Through each grant, we're not just accelerating research; we're improving outcomes until we intimately find a cure for SCN8A gene mutations.

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

The First-Ever Global Diagnosis and Treatment Guidelines for SCN8A are driven by the experiences and needs of those facing this challenging disorder. This groundbreaking effort brings together 30 experts in children's epilepsy from 5 continents and a diverse group of parents. We used a collaborative approach to agree on the best methods for diagnosis and treatment, involving input from both medical professionals and caregivers. Thanks to everyone's contributions, we've created a central resource aimed at providing the best care and treatment options.

But our journey doesn't end here. The next phase is ensuring that these hard-won insights become actionable care for every individual, irrespective of location or language. This is more than translation—it's a commitment to equity and inclusivity, ensuring every parent and clinician's effort culminates in improved ourutomes.

https://scn8aalliance.org/developing-an-scn8a-standard-of-care/

Population(s) Served

The Inchstone Project is a pioneering collaboration focused on driving equitable healthcare for those with developmental and epileptic encephalopathies (DEEs). Recognizing that current clinical tools overlook the 'inchstones'—small but vital improvements—in severely impacted children, we're on a mission to fill this void. The goal is urgent and human: to make medical advancement inclusive, recognizing and celebrating every fragment of progress.

Year-One Highlights:

Formed a diverse Steering Committee.
Engaged six industry advisory groups.
Influenced FDA's patient-focused policy.
Piloted tests, leading to presentations at AES 2022.

Broader Impact:

We're accelerating toward sensitive outcome measures as new clinical trials loom for rare epilepsies. Through extensive research and community dialogue, we're not just creating new metrics—we're improving outcomes, inch by inch.

https://deepconnections.net/inchstone-project/

Population(s) Served

Empowering SCN8A research, the International SCN8A Alliance unifies labs, clinicians, and families to defy knowledge silos and drive equitable, holistic solutions. Our quarterly meet-ups bridge the gap between lab and life, fostering dialogues that enrich both scientific inquiries and family experiences. The SCN8A Registry, a treasure trove of 8-year longitudinal data, aids in groundbreaking studies—such as Loss-of-Function (LOF) research and predictive modeling—that shape the future of personalized therapies.

Our multi-faceted approach is a paradigm of open collaboration, innovation, and patient-centered focus—because breaking barriers in SCN8A research means breaking barriers to brighter, more inclusive futures.

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

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of first-time donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

This represent then number of first time individual donors, not the money received from our relationship with pharmaceutical companies for the clinical trials.

Number of families served

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We support families via our online community, via support requests and in our live online meetings nearly every weekend. We make this accessible by using AI translation services.

Hours of support group services offered

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We offer live online family support, education and empowerment sessions nearly every weekend and use this time to listen/learn from families, shared critical information and support one another.

Number of support groups offered

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We host a variety of meetings that serve a wide range of affected families including grouping meetings to address similarities in challenges faced, by global language or topics of shared interest.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

As we move into the future, our aim is unwavering: to be the lynchpin in SCN8A advancements, focusing predominantly on developmental epilepsies like DEEs. One significant outcome of this commitment is our groundbreaking SCN8A Diagnosis & Treatment Guidelines. We are committed to making these guidelines a global resource, equipping frontline clinicians in every language with the most current practices in the care of SCN8A disorders.

SCN8A Family Meetings, featuring AI language translation, level the playing field by making interactions with top-tier researchers and clinicians universally accessible. This underscores our commitment to equity, ensuring that every family, regardless of their native language, has the opportunity to be well-informed and to be heard. Continued growth of AI translation and other inclusivity services are key to ensuring everyone with SCN8A receives the best care, regardless of geographic location.

Fast-tracking clinical trials and new treatments is another core aim. To achieve this, we will leverage our partnership with 8-year longitudinal SCN8A registry data, a treasure trove of actionable insights and irreplaceable for its depth and scope. Our partnerships with global leaders and industry heavyweights are strategically aligned to bring about tangible, collective advancements in SCN8A science and patient care.

In every initiative, our focus remains consistent: turn information into action, and hope into tangible outcomes. We strive to empower not just families dealing with SCN8A but also the professionals working alongside them. Through this multifaceted approach, we aim to accelerate the pace of discovery and treatment, enriching lives and influencing the entire SCN8A community globally.

All these efforts in diagnosis, treatment, and inclusivity are critical to the day-to-day reality of SCN8A, but ultimately, they are building blocks on our path toward the ultimate goal: finding a cure for SCN8A gene mutations. Every guideline established, every family empowered, and every clinical trial launched moves us closer to this goal. Through unwavering collaboration with global researchers, clinicians, and industry partners, we will continue to push the boundaries of what's possible in SCN8A science. Our dedication to a cure isn't just an aspiration; it's a commitment that shapes our daily work and long-term strategy.

The International SCN8A Alliance operates at the intersection of medical research, patient advocacy, and technological innovation, squarely addressing the UN's 2030 Sustainable Development Goal of Good Health and Well-being. The Alliance has propelled the field forward by introducing the first-ever SCN8A Diagnostic & Treatment Guidelines. This groundbreaking framework is backed by a global panel of 30 pediatric epileptologists and a diverse set of parents, enabling best possible care globally, irrespective of geographical location.

Our inclusivity is underlined by our AI language translation services, ensuring that our weekly Family Network Meetings and scientific data are accessible to anyone, regardless of language barriers. The translation of our treatment guidelines into multiple languages is our most resource-intensive yet essential initiative, underlining our commitment to universal access to information and care.

We've built a global collaborative space through our SCN8A Global Leaders program, working closely with international SCN8A experts to accelerate research and care. In partnership with pharmaceutical companies, we also offer unwavering support for clinical trials. Our robust Registry, containing 8 years of longitudinal data, serves as a cornerstone for these clinical engagements, helping to fine-tune inclusion/exclusion criteria and aiding in site selection for trials.

Moreover, our Research Consortium sustains quarterly dialogues between SCN8A researchers, catalyzing cooperation, and eradicating research silos. Our public webinars demystify complex scientific discussions for families, making cutting-edge research understandable and accessible.

Unveiling new avenues for SCN8A understanding, Dr. Michael Hammer's caregiver-reported global registry has become a treasure trove of longitudinal data, illuminating best and worst treatments, genotype-phenotype correlations, developmental outcomes, and much more.

The Alliance’s work is not confined to the SCN8A community alone. We're actively involved in broader rare disease and epilepsy advocacy efforts, ensuring that our impact echoes across other related disorders as well.

In summary, the International SCN8A Alliance is a comprehensive, inclusive, and innovative initiative that aligns seamlessly with the goal of Good Health and Well-being. We remain committed to equitable access to quality care, transformative research, and a global community united against SCN8A-related disorders.

The International SCN8A Alliance is exceptionally positioned to realize its mission due to its comprehensive capabilities in scientific research, technological innovation, global collaboration, and patient advocacy.

Scientific Research: Led by Dr. Michael Hammer, the Alliance holds a wealth of expertise in the SCN8A space. Dr. Hammer is a world-renowned geneticist who discovered that SCN8A causes epilepsy. His caregiver-reported global registry has become a pivotal source of longitudinal data, guiding treatment options and future research. Our Research Consortium bridges the gaps in the scientific community by fostering quarterly dialogues between SCN8A researchers.

Technological Innovation: Our groundbreaking SCN8A Diagnostic & Treatment Guidelines have been enabled through a state-of-the-art online platform. Furthermore, our AI language translation services democratize access to our weekly Family Network Meetings and scientific data. This ensures that knowledge and community support are not limited by geographical or linguistic barriers.

Global Collaboration: Our SCN8A Global Leaders program involves international SCN8A experts in a collective mission to accelerate research and care. This global reach is amplified through our strong partnerships with pharmaceutical companies, which are fundamental in launching clinical trials and moving the needle in treatment possibilities. Our vast Registry aids these clinical endeavors by providing critical data for refining clinical trial designs.

Patient Advocacy: We put patients and their families at the forefront of all our initiatives. Our weekly SCN8A Family Network Meetings provide a real-time platform for them to interact directly with leading clinicians and researchers. These meetings are an essential component of our community-building efforts and have been vital in providing emotional and informational support.

Resource Allocation: Our organization has successfully mobilized resources through active fundraising campaigns. We've developed compelling content across our digital channels to highlight the urgency and impact of our work, persuading both individual donors and institutional partners to invest in our initiatives. This has ensured sustainable funding for our expansive programs, from language translation to clinical trials.

In summary, the International SCN8A Alliance's robust capabilities are not just multi-dimensional but also deeply interlinked, making us an effective and agile organization. We are well-equipped to meet our ambitious goals, driving forward both the scientific understanding of SCN8A and the well-being of affected families globally.

The International SCN8A Alliance, along with DEE-P Connections and The Inchstone Project, represents a stronghold of education, research, and support for families facing the challenges of severe DEEs. In the past three years, DEE-P Connections alone has produced more than 70 webinars, covering urgent topics like hypotonia and growth attenuation. These initiatives have garnered substantial online traction, including high viewership rates on our YouTube channel.

Our consolidated Resource Center is a monumental effort, assembling materials from over 40 partners. This digital repository offers an expansive collection of DEE-related webinars, research articles, videos, and other essential tools. Notably, in 2022 we introduced a multitude of new subjects, broadening the scope of information available to families, caregivers, and clinicians.

The International SCN8A Alliance has built a global collaboration between nearly every caregiver-led organization in the world with a commitment to work together to eliminate duplication of efforts and jointly strategize/prioritize in order to most rapidly find a cure for SCN8A. We are also uniquely positioned to provide science-driven family support, education and empowerment. One of our co-founders is the geneticist and SCN8A father who discovered SCN8A mutations can cause epilepsy and he is intimately involved in doing research, running our 9 year longitudinal International SCN8A Registry and meeting with families every week to review their unique genetics, provide letargeted learnings from our registry and support them on their journey.

The Inchstone Project is pushing the boundaries in research. With an interdisciplinary team and a strategically assembled steering committee, the project aims to improve outcome measures for those most impacted by DEEs. Our efforts were significantly strengthened by six global industry partnerships, providing essential funding and strategic guidance. We also launched a pilot study, in association with the FamilieSCN2A Foundation, collecting critical data to guide future research activities.

In addition to our core programs, our steering committee and Industry Advisory Panel convened quarterly to evaluate strategies and directions. We also took an active role in shaping FDA guidelines through detailed feedback, focusing on the unique challenges that DEE families face.

As for future goals, we intend to elevate our Resource Center to even greater heights, curating a broader array of topics and resources. On the research front, The Inchstone Project aims to leverage our steering committee's expertise, industry partnerships, and preliminary pilot study results to develop new research paradigms. Together, these initiatives demonstrate our steadfast commitment to an ecosystem of educational, research-based, and collaborative solutions for the global DEE community.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome

Financials

International SCN8A Alliance
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

International SCN8A Alliance

Board of directors
as of 02/04/2024
SOURCE: Self-reported by organization
Board chair

JayEtta Hecker

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

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

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 10/24/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.