Global Autoimmune Institute

Empowering Solutions

aka WALTER AND JEAN BOEK GLOBAL AUTOIMMUNE INSTITUTE   |   Mclean, VA   |  https://www.autoimmuneinstitute.org/

Mission

The Global Autoimmune Institute is empowering solutions in the diagnosis and treatment of autoimmune disease through research, education, and community while supporting multidisciplinary approaches to wellness. We empower patients and caregivers and improve physician/patient relationships by providing easily-accessible, credible resources for identifying autoimmune indicators and supporting disease management, as well as the latest research and therapies. We create collaborative partnerships to deepen our understanding of autoimmunity by funding innovative medical research through grants and awards. We compassionately raise awareness of autoimmune disease, locally and globally, through open, informed dialogue and outreach.

Ruling year info

1967

Executive Director

Sandra Boek Werness

Main address

6819 Elm St, Ste 10

Mclean, VA 22101 USA

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EIN

54-1075268

NTEE code info

Graduate, Professional(Separate Entities) (B50)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

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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?

Exploring Effects of Cancer Immunotherapy Drugs on Autoimmune Manifestations

Postdoctoral research at Johns Hopkins Medicine is exploring the development of autoimmune hypophysitis (primarily affecting the pituitary gland) following cancer immunotherapy. This study is significant and unique, in that it will track the development of this autoimmune disease from inception, in mouse models, in order to better understand the evolution of the disease.

Population(s) Served
Chronically ill people

Through this investigation, we will begin to determine critical questions in autoimmune disease. At this stage, data is limited for most ADs. GAI is determined to help find the real answers and is delighted to support and work with Dr. Foraker and her colleagues who have embarked on this important project.

This study will determine the prevalence of autoimmune disease by year from their catchment area, which will then be extrapolated to the overall U.S. population. The project will also apply data-driven approaches to identify demographic and clinical factors that are predictive of autoimmune disease and to document the co-occurrence of autoimmune and non-autoimmune diseases to describe common “clusters” of diagnoses. This project is expected to help us better understand the burden of autoimmune disease in the U.S. and to aid healthcare providers in more quickly and precisely identifying and treating patients who have an autoimmune disease.

Population(s) Served

This scientific investigation of patients with systemic lupus erythematosus (SLE) patients focuses on whether the Epstein-Barr Virus (EBV) causes production of human antibodies using molecular mimicry in SLE patients. This could suggest that EBV may be a cause of SLE. The long-term goal of the study is to design a treatment to block certain EBV antibodies that cause organ damage in SLE patients.

Population(s) Served

The Children’s National Celiac Disease Program and the Global Autoimmune Institute have worked in partnership since 2015 to develop robust educational resources, including:

Monthly podcast and digital app that now each have more than 20,000 subscribers.
Web-based video education seminars hosted monthly, to help families with this autoimmune disease cope with the chronic condition
Furthermore, we have worked to build alliances amongst pediatric celiac disease programs across the United States and develop national recommendations for managing celiac disease at school and other learning environments.

The Global Autoimmune Institute’s support has also helped Children’s National Hospital (CNH) to advance other innovative projects.

Population(s) Served

Since 2010, this annual event brings the best of the gluten-free industry to Washington DC. The event features an exhibit hall with 60+ gluten-free food manufacturers and restaurants, a cooking stage with interactive demos, and a full day of educational sessions with options for adults and kids.

Nearly 2,000 attendees leave the event filled with knowledge, jam-packed goodie bags, and many new gluten-free friends. The event is live-streamed to capture a global gluten-free audience.

Gluten-Free Education Day 2020 was a fun, virtual experience featuring speakers from around the United States sharing the latest research and knowledge about celiac disease and the gluten-free diet.

Population(s) Served

Through the synthesis of our financial support and the passionate dedication of the Celiac Group, Children’s National Hospital, and GAI, CNH established the first-of-its-kind multidisciplinary clinic for celiac disease patients.

The clinic brings together a gastroenterologist, neurologist, psychologist, nutritionist, and an educational specialist to thoroughly diagnose and treat coexisting autoimmune diseases and neurological and psychological disorders, as well as to teach the patients and their families about proper nutrition and the many important aspects of living a gluten-free life.

Population(s) Served
Chronically ill people
Chronically ill people
Chronically ill people
Chronically ill people
Chronically ill people

Where we work

Affiliations & memberships

Children’s National Hospital Celiac Disease Program 2015

Partnership with Celiac Program CNMC 2016

Partnership with Celiac Program CNMC 2017

Partnership with Celiac Program CNMC 2018

Partnership with Celiac Program CNMC 2019

Partnership with Celiac Program CNMC 2020

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve the following international communities of individuals and their families and loved ones: -Those suffering from diagnosed Autoimmune Diseases; diagnosed autoimmune condition and/or symptoms; illness/symptoms identified as autoimmune but not definitively diagnosed; chronic illness with symptoms that are shared by those who have Autoimmune Disease, and are seeking support and resources in their journey to obtain diagnoses and treatment; and co-existing Autoimmune Diseases and conditions, as well as neurological disorders - Scientific investigators seeking to expand knowledge relating to processes in autoimmune disease - Physicians and hospitals desirous of developing multidisciplinary approaches to diagnosis and treatment of Autoimmune Disease

  • 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), Requests for input on our website and our several social media platforms,

  • How is your organization using feedback from the people you serve?

    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,

  • What significant change resulted from feedback?

    - We post regular articles on our website, and in response to feedback have been focusing more on Covid-19 issues relating to our community, and creating more articles and content relating thereto. - We are developing materials to guide individuals in their journey to obtain medical help. We surveyed our focus group and are editing the final version of these materials with their important comments in mind. - We monitor the responses to our social media efforts on our several platforms in order to tailor our postings to the ongoing and evolving needs and desires of our community at large. - We stay informed of many latest scientific developments, expertises of various institutions in re. a broad range of ongoing investigations relating to Autoimmune Disease, to target our funding

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Please note that as a foundation, we are just beginning to ask for donations to support our work, and we will be sharing information with our funders as this evolves. We are responsive to feedback and continually aim to serve the greatest needs in our community, in accordance with our mission: to raise awareness, fund scientific investigations, and further education in autoimmune disease and neurological disorders.

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    We do a great deal, efficiently using our resources,

Financials

Global Autoimmune Institute
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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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Global Autoimmune Institute

Board of directors
as of 6/21/2021
SOURCE: Self-reported by organization
Board chair

Sandra Boek Werness

Global Autoimmune Institute

Term: 2013 -

Alfreda Jones

TREASURER, BOARD OF DIRECTORS

Susan Gerber

SECRETARY, BOARD OF DIRECTORS

Dorothy Weinstein

MEMBER, BOARD OF DIRECTORS

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

Organizational demographics

SOURCE: Self-reported; last updated 3/1/2021,

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
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