PLATINUM2024

The FamilieSCN2A Foundation

SCN2A Related Autism & Epilepsy

Gettysburg, PA   |  www.scn2a.org

Mission

"Families" is part of our name for a reason. Rare and devastating, SCN2A-related disorders affect the entire family. Our team of leaders strive every day and in every way to improve the lives of not only the patients, but the entire family. Our MISSION is to accelerate research, build community and advocate to improve the lives of those affected by SCN2A-related disorders around the world. Our VISION is a world with effective treatments and cures for all SCN2A-related disorders. Our Values are URGENCY, INTEGRITY, COLLABORATION, and INCLUSION.

Notes from the nonprofit

At the end of every year we reflect back to the previous ones and are in awe of how far we have come in such a short period of time. Gene modifying clinical trials have started in many rare diseases. Science is moving fast and we need to be ready because our turn is coming. The FamilieSCN2A Foundation is now focusing on preparing our community for clinical trials. One of the ways we will accomplish this is by launching the first ever SCN2A Clinical Trial Readiness Study, a prospective, endpoint measurement study. The data from this project will provide the basis for designing an efficient and robust clinical trial. We believe that in order to cure SCN2A related disorders, we need a strong, united community of friends and families all striving for the same goal. This is what sets us apart from many other rare disease nonprofits who focus solely on funding research. In 2021, we will continue to support our community, both the patients and the research, as they are equally important.

Ruling year info

2015

Executive Director

Leah Myers

Main address

PO Box 4260

Gettysburg, PA 17325 USA

Show more contact info

EIN

47-3169795

NTEE code info

Fund Raising and/or Fund Distribution (G12)

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

Our VISION is a world with effective treatments and cures for all SCN2A-related disorders. Our MISSION is to accelerate research, build community and advocate to improve the lives of those affected by SCN2A-related disorders around the world.

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?

SCN2A Research Grants

Through our investigator-initiated grant program, the FamilieSCN2A Foundation hopes to accelerate the development of therapeutic treatments and disease-modifying advancements for those living with changes in the SCN2A gene. This grant program is designed to facilitate preliminary investigations that will potentially lay the groundwork for subsequent grants from the government, industry, or other funding sources, including the FamilieSCN2A Foundation.

Population(s) Served

The FamilieSCN2A Foundation sets aside a limited amount of funds each year to offer small grants to patients with SCN2A Disorders for necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs.

This program is open to all patients worldwide who meet the program requirements. The program closes each year on December 1st or once funds are depleted for that session. Any remaining funds are rolled over, with the program opening each year on International SCN2A Awareness Day, February 24.

Population(s) Served

The FamilieSCN2A Foundation recognizes that the COVID-19 pandemic is causing financial hardship for many families around the globe. Supporting the global SCN2A community is the Foundation's mission so we have worked with our professional advisors to create a new emergency program: FamilieSCN2A Foundation COVID-19 Financial Relief Grant. Whether you are suffering from lost wages, need extra money to stock up on supplies for the quarantine or are having to pay for a caregiver due to school closings, you are not alone and we are here to help.

Population(s) Served
Adults
Health
Adults
Health
Children and youth
Adults
Health
Children and youth

Where we work

Awards

Rare As One grantee 2021

Chan-Zuckerberg Initiative

Affiliations & memberships

Chan-Zuckerberg Rare As One grant awardee 2021

Our results

SOURCE: Self-reported by organization

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

Total number of awarded residencies

This metric is no longer tracked.
Totals By Year
Population(s) Served

Age groups

Related Program

SCN2A Patient Assistance Grant

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

A world with effective treatments and cures for all SCN2A-related disorders.

Coordinate and collaborate with researchers around the world to find the cause of and cure for SCN2A mutations.

Increase public awareness about the severity and prevalence of this rare form of epilepsy.

Aid in the early detection and correct treatment of this disease.

Support an international database on all SCN2A patients.

Provide educational and emotional support for patients and families by connecting them with other families.

Our BOD boasts 10 determined volunteers working as a unit to meet the vision of the foundation. Eight of the BOD members are parents of a child with an SCN2A disorder so the patient first philosophy is always at the forefront of everything we do. The other 2 BOD members are community members who bring a level of professionalism to the table with a non parent perspective.

The Foundation also has a 13 member scientific and medical advisory board that guides the strategic planning and execution of the research grants and support we award.

Lastly, we have a full time paid executive director dedicated to creating and overseeing all day to day programs.

The FamilieSCN2A Foundation has:

Awarded over $1 million in research support

Hosted 4 - SCN2A Family & Professional Conferences

Granted over $70,000 in direct patient support

Support an international SCN2A Database available to researchers

Partnered with multiple synergetic groups to pool resources and amplify the voice for our rare disease and others

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
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

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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

The FamilieSCN2A Foundation
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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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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • 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.

The FamilieSCN2A Foundation

Board of directors
as of 01/23/2024
SOURCE: Self-reported by organization
Board co-chair

Jennifer Burke


Board co-chair

Mery Oman

FamilieSCN2A Foundation

Term: 2022 - 2025

Jennifer Burke

FamilieSCN2A Foundation

Michelle Lewis

FamilieSCN2A Foundation

Will Hutson

FamilieSCN2A Foundation

Catalina Betancur

FamilieSCN2A Foundation

Emily Park

FamilieSCN2A Foundation

Mike Vasey

FamilieSCN2A Foundation

Mery Oman

FamilieSCN2A Foundation

Maura Bragg

FamilieSCN2A Foundation

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 ? Yes
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 1/23/2024

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

Race & ethnicity

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/01/2021

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • 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 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.