The FamilieSCN2A Foundation
SCN2A Related Autism & Epilepsy
Programs and results
What we aim to solve
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
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.
SCN2A Patient Assistance Grant
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.
FamilieSCN2A Foundation COVID-19 Financial Relief Grant
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.
Where we work
Awards
Rare As One grantee 2021
Chan-Zuckerberg Initiative
Affiliations & memberships
Chan-Zuckerberg Rare As One grant awardee 2021
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsTotal 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
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
A world with effective treatments and cures for all SCN2A-related disorders.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
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
Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.
Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild 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.
Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 01/23/2024
Jennifer Burke
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
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
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
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 02/01/2021GuideStar 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
- 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 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.