Syngap Research Fund Incorporated
Collaboration - Transparency - Urgency
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
2019
Managing Director
Mike Graglia
Co-Founder
Ashley Evans
Main address
1270 LINCOLN AVE
PALO ALTO, CA 94301 USA
EIN
83-1200789
NTEE code
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 2019.
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Communication
Programs and results
What we aim to solve
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
What are the organization's current programs, how do they measure success, and who do the programs serve?
SYNGAP1 Conference 2022: Charting our rare disease treatment path
Scientific Meeting: Thursday, December 1
Caregiver Connect: Friday, December 2
Who: SYNGAP1 families, doctors, scientists, researchers, & industry reps
What: A two-day conference, with scientific meeting (Thursday, December 1) & family meeting (Friday, December 2)
When: December 1st & 2nd, 2022
Where: Holiday Inn Express & Conference Center, 920 Broadway, Nashville, TN 37203
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!
Videos can be found here: https://www.syngapresearchfund.org/post/2022-syngap1-conference-roundtable
Where we work
External reviews
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsNumber 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
Learn 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?
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
What are the organization's key strategies for making this happen?
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
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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
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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.
Syngap Research Fund Incorporated
Board of directorsas of 01/24/2023
Marta Caceres Dahiya
Pavel Gerovich
Mike Graglia
Virginie McNamar
Peter Halliburton
Aaron Harding
Victoria Arteaga
Pavel Gerovich
Hans Schlecht
Suzanne Jones
Nancy Kessler
Sydney Stelmaszek
Michael Langen
Melissa Foster
Stella Tavilla
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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:
The organization's co-leader identifies as:
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
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- Contractor and/or Paid Preparer data for 2021, 2020, 2019
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