PLATINUM2024

Syngap Research Fund Incorporated

Collaboration - Transparency - Urgency

aka SRF   |   San Diego, CA   |  https://cureSYNGAP1.org

Mission

SRF is a 501(c)(3) public charity incorporated in 2018. The mission is to improve the quality of life of SYNGAP1 patients through the research and development of treatments, therapies and support systems. Completely parent led, SRF is the largest non-government funder of SynGAP research. The founders cover SRF overhead, allowing donations to go toward research and programs to help SYNGAP1 patients. SRFs mantra is Collaboration, Transparency & Urgency.

Ruling year info

2019

Managing Director

Mike Graglia

Co-Founder

Ashley Evans

Main address

2856 Curie Place

San Diego, CA 92122 USA

Show more contact info

EIN

83-1200789

NTEE code info

Birth Defects (G20)

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

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

SynGAP is an ultra-rare, under- diagnosed, debilitating genetic disorder for which there is no precision treatment currently available.. SynGAP1 patients often present the following symptoms: - Intellectual Disability (mild to severe) - Epilepsy (subtle eyelid flutters, brief jerks, staring seizures and drop seizures) - Autism Spectrum Disorder - Sleep and Behavior disorder - Hypotonia (low muscle tone) - Global Development Delays - Sensory Processing Disorder - Gross and Fine motor skill delays - Dyspraxia (coordination disorder) - Speech delay/Apraxia (mild to severe) - Visual Abnormalities

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?

SYNGAP1 Conference 2023: Uniting for Progress

Scientific Meeting: Thursday, November 30
Caregiver Connect: Friday, December 1

Who: SYNGAP1 families, doctors, scientists, researchers, & industry reps

What: A two-day conference, with scientific meeting (Thursday, November 30) & family meeting (Friday, December 1)

When: December 1st & 2nd, 2022

Where: Orlando, Florida

Why: SRF will be holding a SYNGAP1 scientific meeting for SYNGAP1 parents, scientists, researchers, & other industry. We've added a special non-science family meeting the following day!

Recap can be found here: https://curesyngap1.org/blog/syngap1-conference-2023-science-day-a-summary/

Population(s) Served

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 research studies funded

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

People with disabilities

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of list subscribers

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of press releases developed and distributed

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of Facebook followers

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

Context - describing the issue we work on

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.

Syngap Research Fund aims to accomplish the following:
1. Find treatments to improve the quality of life of Syngap1 Patients
2. Gather data to accelerate research and get a better understanding of the disease
3. Provide support and education to families
4. Increase the diagnostics rate

Find Treatments

- Identify and partner with scientists and labs
- Fund research projects
- Collaborate with other Syngap Organizations outside of the US

Gather Data (Ciitizen)

Use new powerful tech tools to gather patients' entire medical records with minimum efforts from families.


Support and Educate families

- Connect families through social media support groups
- Ambassador program
- Blog
- Provide layman’s terms explanation for key scientific papers
- Connect families and researchers


Increase diagnostics rate

- Awareness
- Webinars and podcasts
- Articles
- Partnership with other rare diseases

Our main strength is out team. We have a full time managing director and a team of 36 volunteer leaders including 32 motivated parents.
We also have a strong SAB (https://syngapresearchfund.org/sab) and a team of parents with strong medical background.

SRF Grants to Syngap researchers:

Heller
Lowenstien
Rumbaugh
Holder
Huganir

Syngap Census - quarterly updates on the worldwide number of known patients https://www.syngapresearchfund.org/post/syngapcensus-2q21-46-new-patients

Natural History Study:
We launched the most comprehensive Syngap1 Natural History Study on the Ciitizen platform pulling patients entire medical records.

SRF is member of several key organizations:
Precision Medicine Coalition
CombinedBrain
Global Genes
NORD

SRF also partners with many rare diseases organizations and is a member of Syngap Global Network, a coalition of Syngap organizations and advocate groups around the world.

Family support

We offer weekly virtual meetings to allow families to connect with each other.
Newly diagnosed families receive a welcome packet with detailed information on navigating life with Syngap.
Our ambassador program provides regional support to families.
Curated FB group in partnership with other global SYNGAP groups

Education

Our blog contains a variety of important information for our patient community and content is added very frequently:
https://syngapresearchfund.org/blog
Syngap researchers are featured in our Scientific Webinar series and have the opportunity to present their work and answer questions from families, peers and industry. https://syngapresearchfund.org/webinars

Awareness
Splash 4 Syngap - Syngap Awareness Day - June 21 - International Partnership with Syngap Global Network members
Wednesday Warriors - Meet a Syngap patient every week on our social media

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 bright spots and enhance positive service experiences, 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 take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.)

  • What challenges does the organization face when collecting feedback?

Financials

Syngap Research Fund Incorporated
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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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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.

Syngap Research Fund Incorporated

Board of directors
as of 02/19/2024
SOURCE: Self-reported by organization
Board chair

Suzanne Jones

Mike Graglia

Peter Halliburton

Aaron Harding

Victoria Arteaga

Pavel Gerovich

Suzanne Jones

Nancy Kessler

Sydney Stelmaszek

Michael Langen

Melissa Foster

Stella Tavilla

Emily Barnes

Jess Fares

Julie Miles

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? Not applicable
  • 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 2/19/2024

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
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without 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 without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

No data

We do not display disability information for organizations with fewer than 15 staff.