Disease, Disorders, Medical Disciplines

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

A non-profit organization dedicated to finding treatment options for the neurological disease SLC13A5

aka TESS Research Foundation, Citrate Transporter Disorder Research Foundation

Menlo Park, CA

Mission

We are a non-profit organization dedicated to finding treatment options for the neurological disease SLC13A5 Deficiency (Citrate Transporter Disorder).

Ruling Year

2015

President

Kimberly Lodato Nye

Main Address

655 Oak Grove Ave Unit 53

Menlo Park, CA 94026 USA

Keywords

medical, treatment, health, neurological, disease, slc13a5, brain, epilepsy, seizures, research, citrate transporter disorder

EIN

47-3108868

 Number

0565319473

Cause Area (NTEE Code)

Epilepsy (G54)

Epilepsy Research (H54)

IRS Filing Requirement

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

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Programs + Results

What we aim to solve

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

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

TESS Research Foundation Grant

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of conferences held

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Average grant amount

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

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.

We are confident that we are making progress in all three of our program areas: family support, conferences, and research funding. The number of families enrolled in our registry increases each year. Our conference attendance numbers also continue to grow. Researchers funded directly by TESS Research Foundation have gone on to receive NIH funding for the continuation of their SLC13A5 Deficiency studies. We communicate progress in all of our program areas through newsletters, mailings, and our website.

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.

External Reviews

Financials

Treatments for Epilepsy and Symptoms of Slc13a5 Foundation

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  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2015
  • A Pro report is also available for this organization.

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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2015
  • A Pro report is also available for this organization.

See what's included

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

No

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

No

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

No

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

No