Syngap Research Fund Incorporated

Collaboration - Transparency - Urgency

aka SRF   |   PALO ALTO, CA   |  https://www.syngapresearchfund.org/

Mission

SRF, est 2018, exists to improve the quality of life of SynGAP patients through the research and development of treatments, therapies and support systems.

Ruling year info

2019

Managing Director

Mike Graglia

Co-Founder

Ashley Evans

Main address

1270 LINCOLN AVE

PALO ALTO, CA 94301 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.

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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 Roundtable at American Epilepsy Society

SynGAP Research Fund will host the Second annual SynGAP1 Roundtable on December 6th at 8:00 – 9:30 a.m. at the Hilton Hotel in Baltimore, MD. Breakfast will be provided and doors open at 7:30.

The purpose of the SynGAP1 Roundtable is for scientists and medical professionals to learn about and discuss the progress of SynGAP1 research and its associated clinical impact. Based on your clinical experience and/or the published literature, you have discussed or shown interest in the SynGAP1 protein.

SRF 2nd Annual SynGAP Roundtable
Friday, December 4th, 2020 via Zoom (Register here: http://syngap.fund/RT2)
8:00 Mary Kennedy, PhD, CalTech
8:30 Elizabeth Heller, PhD, UPenn
9:00 Gavin Rumbaugh, PhD, Scripps
9:30 Marcelo Coba, PhD, USC
10:00 Elise Brimble MSC, MS, CGC, Ciitizen
10:30 Constance Smith-Hicks, MD PhD, Johns Hopkins
11:00 Alfred George, MD, Northwestern
11:30 Hans Schlecht MD, MMSc, SRF
12:00 J. Michael Graglia, MBA, MA, SRF
12:15 SRF Families Lunch and debrief, register here. Ends at 2.
All times Pacific

Our speakers
Mary Kennedy, PhD is the The Allen and Lenabelle Davis Professor of Biology at Caltech and has spent her career researching the molecular basis of neuron function. In 1999 she co-described SynGAP1 as a major component of the postsynaptic density and has further elucidated its role in synaptic plasticity since then.

Elizabeth Heller, PhD is Assistant Professor of Pharmacology, Department of Systems Pharmacology and Translational Therapeutics within the Institute for Translational Medicine and Therapeutics of the University of Pennsylvania. Her Laboratory of Neuroepigenetics studies the mechanisms by which epigenome processes affect neuronal gene function and behavior. In addition, she is the aunt of an adorable SynGAP-affected girl, Ruby.

Gavin Rumbaugh, PhD is Professor of Neuroscience and Molecular Medicine at the Scripps Research Institute where the goal of his lab is to understand how synaptic connections contribute to the development and function of the neural circuits of memory and cognition. His lab hopes to develop novel therapeutic strategies to improve brain function in patients with autism spectrum disorders and intellectual disability.

Marcelo Coba, PhD is Associate Professor of Psychiatry & the Behavioral Sciences at the
Zilkha Neurogenetic Institute of the University of Southern California. The long-term goal of his lab is to determine how genetic variants affect synapse function, not individually, but in developmental signaling network. Using a systems biology approach,this lab hopes to define network maps that will allow us to treat patients by their correspondent pathway signatures.

Alfred L. George, Jr., MD is the Magerstadt Professor of Pharmacology; Chair, Department of Pharmacology; and Director, Center for Pharmacogenomics at Northwestern University. His lab has focused on the molecular basis of human disease with emphasis on the ion channels of cardiac function and the genetic epilepsies.

Constance Smith-Hicks, MD PhD is Assistant Professor in the Department of Neurology at the Johns Hopkins University School of Medicine. She is a child neurologist and research scientist at the Kennedy Krieger Institute where she is Medical Director for the Center for Autism and Related Disorders, and co-director of the SYNGAP1 clinical programs. Dr. Smith-Hicks’ research team works to understand the process by which neurons are selected to integrate into networks and the effect of imbalance of excitation and inhibition on the ability of neurons to integrate into stable networks.

Population(s) Served
Adults

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
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.

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 collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person),

  • 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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

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

  • 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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  • 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 8/5/2021
SOURCE: Self-reported by organization
Board co-chair

Marta Caceres Dahiya


Board co-chair

Pavel Gerovich

Mike Graglia

Virginie McNamar

Peter Halliburton

Aaron Harding

Olga Bothe

Victoria Arteaga

Summer Slaght

Rebecca Kohlhepp

Pavel Gerovich

Hans Schlecht

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? Not applicable
  • 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 07/26/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
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 (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data