The APS Type 1 Foundation, Inc.

STONY BROOK, NY   |  www.apstype1.org

Mission

Increase awareness and help fund research until we find a cure for APS Type 1.

Ruling year info

2014

President

Mr. Todd Talarico

Main address

PO BOX 404

STONY BROOK, NY 11790 USA

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EIN

32-0241819

NTEE code info

Specifically Named Diseases Research (H80)

Diseases of Specific Organs (G40)

IRS filing requirement

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

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The problem's and needs of our organization include early diagnoses, fund research to improve and gain best treatment practices through educating the medical community and to support and educate families within the APS 1 community. APS Type 1 also known as APECED is a rare disorder and most patients remain undiagnosed for 7-10 years. Starting a non-profit foundation was the first key in helping find other patients with the same disorder. Research is critical in promoting early diagnoses and better treatment options. By funding research, increasing education and awareness of the medical community we can reach our goals. As a rare disorder, 1: 2,000,000, there are many undiagnosed patients in the world. Our goal of starting a world wide Natural History Registry for APS Type 1 patients was accomplished in 2019. The international researchers that study APS Type1 surmise there are more children out there but some of these children have died due to improper diagnoses.

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?

APS Type 1 Foundation International Symposium

Our biannual international symposium brings together researchers, families, patients and clinicians from around the world in order to educate, increase awareness, promote faster diagnoses, more effective treatment and potentially a cure .

Population(s) Served
People with diseases and illnesses
Families

This online data system coordinated through NORD and funded in part by the FDA collects, stores, and retrieves patient data for analysis in research studies. The more data we can collect, the better the information we can give to researchers, so they may more quickly find better treatments, earlier diagnosis, and one day – A CURE! The Natural History Study is designed to help the medical and research communities understand illness progression, treatment options and outcomes, disease burden as well as collect important demographic information about patient age, gender, location etc.. With this vital information from large numbers of participants, we can better advocate for resources to improve patient support and doctor education, as well as accelerate research.

Population(s) Served
People with diseases and illnesses

The APS Type 1 Foundation has funded $400,000 in research grants through the National Organization for Rare Disorders. Grants issued have ranged from $50,000-$100,00.

Population(s) Served
People with diseases and illnesses

Where we work

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.

Ultimately find a cure. Our goal is to support research, educate the medical community and increase awareness among all disciplines in the medical field and offer support and education through our website www.apstype1.org.
We have launched a World Wide Natural History Study in 2019 in order to collect, store, and retrieve patient data for analysis in research studies.
Fundraise in order to fund critical research that will lead to best practices and potentially a cure.

Our strategies are; fundraise, grant writing, our website, lecture to societies and associations that are involved in the care of APS 1 and host an International Symposium every two years. The first was in Toronto, Canada 2015, then Stony Brook, NY in 2017, and Baltimore June 2019 in partnership with the Immune Deficiency Foundation. The 2021 International Symposium was accomplished over zoom. The Foundation currently holds quarterly meetings with physicians and researchers world wide over zoom. Our next symposium is tentatively scheduled for November 2022 in Toronto. This will be our first physician and research clinicians only international symposium. The next patient, family, clinician and research clinician symposium will be scheduled in 2023.
The Natural History Study is an ongoing registry that will help to improve data and give international researchers easier access to data from our patient data base. The first research paper from the registry will be out in 2022.
The foundation's website provides much needed information to families and patients. We have all symposium lectures on the website for viewing on line. We created a research section on the website to provide clinicians with past and present research and practices for APS Type 1.

Our website has brought in many new patients by reviewing the in depth information provided on the site. It will be necessary to continue to recruit patients and maintain our Natural History Registry. The foundation holds quarterly international calls with clinicians and researchers from around the world. We will continue to plan international symposia for patients, families, clinicians and researchers. The foundation now provides a quarterly newsletter . This newsletter provides research articles, community spotlight, areas of interest to our population, upcoming and past event information and stories, and a year end financial report in the first quarterly paper. We have had many successful years of fundraising, grants and support from local businesses, hospitals, families and friends.

2014 Established 501(c) 3
20151st International Symposium, Toronto, Canada
2015 Added two new board members
2016 Incorporated Foundation
2017 Quarterly International conference calls with clinicians and researchers
2017 2nd International Symposium Stony Brook, NY
2018 Aligned with NORD's FDA grant to launch NHS
2019 3rd International Symposium Baltimore, Maryland
2019 Rebuilt website launched
2019 Launched Natural History Study/Registry
2019 received $10,000 in Grant money from Global Genes to assist patients affected financially by COVID
2019 Zoom calls every 4-6 weeks in partnership with Immune Deficiency Foundation for our community during COVID
2020 Continued Zoom calls with our community
2021 Received a grant from Chan Zuckerberg to grow foundation's operations

Financials

The APS Type 1 Foundation, Inc.
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Operations

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

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The APS Type 1 Foundation, Inc.

Board of directors
as of 03/17/2022
SOURCE: Self-reported by organization
Board chair

Mr. Todd Talarico

Sherri Seyfert

David Seyfert

Jennifer Orange

Robin Finch

Organizational demographics

SOURCE: Self-reported; last updated 3/17/2022

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

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 10/30/2020

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
Policies and processes
  • 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.