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Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

Driving research to cure SLC13A5 Epilepsy

aka TESS Research Foundation   |   Menlo Park, CA   |  tessresearch.org

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GuideStar Charity Check

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

EIN: 47-3108868


Mission

TESS Research Foundation is a 501(c)(3) tax exempt public charity established to fund cutting-edge research to diagnose, treat, and ultimately cure SLC13A5 Epilepsy, and provides support for affected children and their families.

Notes from the nonprofit

We are so grateful for all who support us!

Ruling year info

2015

Executive Director

Mrs. Kimberly Nye

Main address

655 Oak Grove Ave Unit 53

Menlo Park, CA 94026 USA

Show more contact info

EIN

47-3108868

Subject area info

Epilepsy

Population served info

Families

Parents

Caregivers

People with disabilities

People with diseases and illnesses

NTEE code info

Epilepsy (G54)

Epilepsy Research (H54)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Tax forms

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Imagine having hundreds of seizures a day, a movement disorder like Parkinson’s, and the ability to understand language but only utter a few words. This is the reality for children living with Citrate Transporter Disorder (gene name SLC13A5). Children with Citrate Transporter Disorder suffer life-long seizures, up to hundreds a day, that are difficult or impossible to control with existing medications. They require 24/7 supervision. TESS Research Foundation is the only research charity solely dedicated to Citrate Transporter Disorder. Children across the globe, and their families, are relying on us to finish the job we set out to do: identify treatments and develop a cure for this terrible disease.

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?

TESS Research Foundation Grant

The purpose of this grant is to fund research focused on understanding the disease mechanism and finding treatment options for the epileptic encephalopathy caused by mutations in the SLC13A5 gene.

Population(s) Served
People with diseases and illnesses
Families

Where we work

Affiliations & memberships

NORD 2021

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 conferences held

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

Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Average grant amount

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

Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

TESS Research Foundation is a 501(c)(3) tax exempt public charity established to fund collaborative and open research in precision health for the treatment of SLC13A5 Deficiency, to serve as a resource to families who are impacted by the genetic disorder and to facilitate the sharing of information for those engaged in research on the topic.

We fund projects that have the best chance of leading to a cure for SLC13A5 Deficiency. To date, we have funded projects at UCSD, University of Calgary, Brown University, Stanford University, Baylor College of Medicine, NYU, UNC, UT Southwestern, and the Institute of Science and Technology Austria.

We host an annual international SLC13A5 Deficiency Research Roundtable in order to promote collaboration among researchers.

TESS Research Foundation supports diagnosed families. With our monthly Family Support Conference calls, Family Newsletter, Patient Registry, and private Facebook page just for affected families, our TESS team considers it an honor to serve these families and to help in every way we can.

We do all this through the generous support of our donors, under the direction of our volunteer Board of Directors and our world-class volunteer Scientific Advisory Board.

Through the generous support of our donors and under the direction of our volunteer Board of Directors and our world-class volunteer Scientific Advisory Board, we are able to drive research and help families with SLC13A5 Deficiency.

There are clear signs of progress in each of our three programs. The number of children diagnosed with SLC13A5 Deficiency continues to increase. Our international research roundtable attracts more scientists each year. The research grant cycle continues to draw in grant applications from leading researchers in citrate transport, seizure disorders, and neuronal development. In total, $560,000 in grants have been awarded since we started TESS Research Foundation in 2015.

This year, in addition to funding our existing research, we are setting our sites on a new horizon, one of hope for the kids already born with Citrate Transporter Disorder, to develop a gene therapy.

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, 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 engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, 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 honest feedback from the people we serve

Financials

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

85.59

Average of 80.35 over 8 years

Months of cash in 2022 info

SOURCE: IRS Form 990

5.9

Average of 19.2 over 8 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

9%

Average of 4% over 8 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of Treatments for Epilepsy and Symptoms of Slc13a5 Foundation’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $113,966 $24,159 $199,421 $277,147 -$257,617
As % of expenses 65.9% 6.6% 175.3% 59.4% -29.7%
Unrestricted surplus (deficit) after depreciation $113,966 $24,159 $199,421 $277,147 -$257,617
As % of expenses 65.9% 6.6% 175.3% 59.4% -29.7%
Revenue composition info
Total revenue (unrestricted & restricted) $286,889 $392,669 $675,901 $381,268 $610,734
Total revenue, % change over prior year 54.4% 36.9% 72.1% -43.6% 60.2%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.0% 0.0% 0.0% 0.0% 0.0%
Government grants 0.0% 0.0% 0.0% 3.9% 2.5%
All other grants and contributions 100.0% 100.0% 100.0% 96.1% 97.5%
Other revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Expense composition info
Total expenses before depreciation $172,923 $368,510 $113,779 $466,822 $868,351
Total expenses, % change over prior year -30.5% 113.1% -69.1% 310.3% 86.0%
Personnel 0.0% 0.0% 19.9% 23.4% 25.3%
Professional fees 25.3% 7.1% 55.1% 10.7% 2.2%
Occupancy 0.0% 0.0% 9.4% 2.2% 1.5%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 57.8% 91.5% 8.7% 52.5% 60.7%
All other expenses 16.9% 1.4% 6.9% 11.2% 10.3%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $172,923 $368,510 $113,779 $466,822 $868,351
One month of savings $14,410 $30,709 $9,482 $38,902 $72,363
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $187,333 $399,219 $123,261 $505,724 $940,714

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 13.7 7.3 84.2 17.8 5.9
Months of cash and investments 13.7 7.3 84.2 17.8 5.9
Months of estimated liquid unrestricted net assets 13.8 7.3 44.6 18.0 6.1
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $197,894 $223,542 $798,282 $691,851 $424,997
Investments $0 $0 $0 $0 $0
Receivables $1,000 $0 $0 $24,180 $20,347
Gross land, buildings, equipment (LBE) $0 $0 $0 $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 0.0% 0.0%
Liabilities (as a % of assets) 0.0% 0.2% 1.6% 2.5% 1.2%
Unrestricted net assets $0 $0 $422,474 $699,621 $442,004
Temporarily restricted net assets $0 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $0 $0 $362,701 $0 $0
Total net assets $198,894 $223,053 $785,175 $699,621 $442,004

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

Executive Director

Mrs. Kimberly Nye

Number of employees

Source: IRS Form 990

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

Board of directors
as of 05/14/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board co-chair

Kimberly Nye


Board co-chair

Mr. Michael Black

Courtney Lodato Alberti

Adam Alberti

Paula Gani Noah

Kevin McDonnell

Lee Scheuer

Bob Wassman

Megan Gilbert

Don Neault

Rich Windisch

Janet Wojcicki

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 5/14/2024

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, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without 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: 08/06/2021

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 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 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.