PLATINUM2024

Vasculitis Foundation

Navigating the Unknown - You are not alone

Kansas City, MO   |  www.vasculitisfoundation.org
GuideStar Charity Check

Vasculitis Foundation

EIN: 43-1492959


Mission

Building upon the collective strength of the vasculitis community, the Foundation supports, inspires and empowers individuals with vasculitis and their families through a wide range of education, research, clinical, and awareness initiatives. (ratified 12.13.2017)

Ruling year info

1990

Executive Director

Ms. Joyce A Kullman

Main address

PO Box 28660

Kansas City, MO 64188 USA

Show more contact info

Formerly known as

Wegener's Granulomatosis Association

Wegener's Granulomatosis Support Group, International

EIN

43-1492959

Subject area info

Health care quality

Health care access

Dermatology

Immunology

Neurology

Show more subject areas

Population served info

Children and youth

Adults

People with diseases and illnesses

NTEE code info

Specifically Named Diseases (G80)

Specifically Named Diseases Research (H80)

Diseases of Specific Organs (G40)

What we aim to solve

SOURCE: Self-reported by organization

Vasculitis is a condition that involves inflammation in the blood vessels. The condition occurs if your immune system attacks your blood vessels by mistake. This may happen as the result of an infection, a medicine, or another disease or condition. Often patients go undiagnosed for years because the symptoms can mimic other diseases. At the Vasculitis Foundation, it isn’t enough to rest on what we have done, it is critical to our friends and family living with vasculitis to do more.

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?

Support and Education

Knowledge is key to a patient understanding vasculitis. Through our website, e-news, conferences and webinars, 800 number and symposia the VF educates its members about the diseases. The educational materials provide the most current information on medications and medical procedures.

Population(s) Served
Adults
Children and youth

Vasculitis Foundation (VF) members are encouraged to raise awareness of vasculitis and the VF year-round in their local communities. Members distribute information to medical offices, hospitals, health centers, pharmacies and libraries. Vasculitis Awareness Month is an international campaign celebrated in May and activities include Patient Heroes, V-RED, educational materials and fun activities for people of all ages to participate in. Events are organized by individuals, families and VF chapters.

Population(s) Served
Adults
Children and youth

The VF Research and Fellowship Program was established in 2001 to encourage and support research into the cause(s), cure and treatment of vasculitis. We have funded 29 Fellows, 32 countries, 75 studies, and $3,000,000 .

Population(s) Served
Adults
Children and youth

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2000

National Organization for Rare Disorders - Member 2007

National Organization for Rare Disorders - Member 2008

National Organization for Rare Disorders - Member 2009

National Organization for Rare Disorders - Member 2010

National Organization for Rare Disorders - Member 2012

National Organization for Rare Disorders - Member 2013

National Organization for Rare Disorders - Member 2014

National Organization for Rare Disorders - Member 2015

National Organization for Rare Disorders - Member 2016

National Organization for Rare Disorders - Member 2017

National Organization for Rare Disorders - Member 2018

National Organization for Rare Disorders - Member 2019

National Organization for Rare Disorders - Member 2020

National Organization for Rare Disorders - Member 2021

American Autoimmune Related Diseases Association 2021

Autoimmune Association - Member 2022

National Organization for Rare Disease - Member 2022

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total dollars received in contributions

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

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Total revenue for fiscal years ending June 20, 2020, June 30, 2021; and June 30, 2022.

Number of online groups served

This metric is no longer tracked.
Totals By Year
Related Program

Support and Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The Vasculitis Foundation implemented Patient Support Group Meetings to connect people living with vasculitis virtually. This metric is the number of meetings held monthly.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Related Program

Support and Education

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

The number of attendees for virtual and in-person conferences.

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.

Over the next three years, our efforts will focus on early diagnosis, better treatments and longer, better lives for friends and family living with vasculitis. Knowledge is power, and we are constantly seeking new and effective methods for reaching both the patient and medical community. The more each person learns, the more empowered they are to make decisions. In the coming year, we will focus on the first step— helping physicians recognize vasculitis as early as possible.

No one will argue that getting diagnosed early allows for treatment to start before the damage is too far along. Here is one approach the VF is developing.

The American College of Rheumatology (ACR)/ Vasculitis Foundation (VF) Treatment Guidelines. The organizations hope the guidelines will help providers better understand and treat the various forms of vasculitis. As much as the guidelines highlight what evidence-based knowledge exists for the treatment and management of vasculitis, they also shine a light on what work needs to be done. The VF will use multiple approaches to get the guidelines in the hands of healthcare providers.

Educational materials and website provides access to learning tools about each type of vasculitis. Disseminating information at regional conferences and a biennial symposium brings patients and providers together to discuss key topics relating to a patient's journey.

The Vasculitis Foundation is recognized as the leading international provider of information on the disease and resources to help patients find knowledgeable physicians and support. As a partner in the Vasculitis Clinical Research Consortium (VCRC) we have funded five fellowships and participated in the development of 12+ vasculitis centers across the country and internationally.

We will launch a new website at the end of 2023 with updated materials on the 20 different forms of vasculitis. We are sharing all our updated medical information with vasculitis centers and physicians around the world for translation into French, Spanish, Mandarin, and Japanese languages. We believe this will enable patients around the world to have access to the most current information on diagnosis, treatments, and techniques to manage the disease. The new website will feature videos of physicians.

Over the past 15 years, the VF Research Program has funded over $2,000,000 in scientific studies to better understand the disease and its mechanisms. Our Vasculitis Patient-Powered Research Network (V-PPRN) has over 2,500 patients participating in online surveys and questionnaires to gather long-term data on patient's individual journeys and experiences.

The VF website has 10,000 unique visitors each month seeking information on diagnosis, treatment, physicians, and support. Our 800-toll free line receives approximately 60 calls per month and our online Contact Us form averages over 4,000 requests annually.

Building on our achievements, we look forward to reducing the amount of time it takes to diagnose a patient, expanding the breadth of research in vasculitis, and continuing to improve supportive services for patients and caregivers.

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 and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, 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 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 look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

81.76

Average of 32.15 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

14.2

Average of 2.3 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

12%

Average of 15% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Vasculitis Foundation

Revenue & expenses

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Vasculitis Foundation

Balance sheet

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Vasculitis Foundation

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990 info

This snapshot of Vasculitis Foundation’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $77,248 -$165,161 $132,908 $362,676 $138,441
As % of expenses 7.8% -15.3% 9.7% 41.4% 13.0%
Unrestricted surplus (deficit) after depreciation $77,167 -$168,786 $113,272 $342,888 $120,547
As % of expenses 7.8% -15.5% 8.1% 38.3% 11.2%
Revenue composition info
Total revenue (unrestricted & restricted) $1,081,157 $1,413,621 $1,156,554 $1,330,516 $1,569,283
Total revenue, % change over prior year -21.7% 30.8% -18.2% 15.0% 17.9%
Program services revenue 10.3% 5.6% 9.3% 0.3% 2.2%
Membership dues 2.3% 1.8% 0.8% 0.2% 0.3%
Investment income 1.8% 3.1% 2.3% 1.1% 0.9%
Government grants 0.0% 0.0% 0.0% 11.0% 0.0%
All other grants and contributions 84.9% 89.0% 86.2% 84.2% 95.4%
Other revenue 0.7% 0.5% 1.4% 3.2% 1.2%
Expense composition info
Total expenses before depreciation $985,795 $1,082,707 $1,371,741 $875,914 $1,062,429
Total expenses, % change over prior year -15.1% 9.8% 26.7% -36.1% 21.3%
Personnel 25.9% 33.2% 25.8% 39.9% 34.2%
Professional fees 10.3% 7.5% 4.0% 5.0% 4.9%
Occupancy 0.0% 0.0% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 33.0% 20.9% 23.0% 22.3% 40.7%
All other expenses 30.9% 38.3% 47.2% 32.8% 20.2%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $985,876 $1,086,332 $1,391,377 $895,702 $1,080,323
One month of savings $82,150 $90,226 $114,312 $72,993 $88,536
Debt principal payment $0 $0 $0 $72,960 $0
Fixed asset additions $1,467 $56,457 $0 $0 $0
Total full costs (estimated) $1,069,493 $1,233,015 $1,505,689 $1,041,655 $1,168,859

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 1.0 1.0 0.9 3.2 14.2
Months of cash and investments 17.5 19.6 14.0 25.4 26.2
Months of estimated liquid unrestricted net assets 6.0 3.0 3.5 10.5 10.1
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $85,640 $85,925 $103,038 $234,848 $1,257,332
Investments $1,353,658 $1,679,894 $1,499,403 $1,619,694 $1,065,294
Receivables $56,049 $9,996 $18,253 $200,868 $102,437
Gross land, buildings, equipment (LBE) $56,994 $113,452 $115,138 $115,138 $126,877
Accumulated depreciation (as a % of LBE) 97.6% 52.2% 68.5% 85.7% 91.9%
Liabilities (as a % of assets) 4.5% 4.1% 6.4% 1.5% 1.2%
Unrestricted net assets $493,212 $324,426 $437,698 $780,586 $901,133
Temporarily restricted net assets $939,744 $1,455,014 N/A N/A N/A
Permanently restricted net assets $0 $0 N/A N/A N/A
Total restricted net assets $939,744 $1,455,014 $1,117,790 $1,270,723 $1,528,389
Total net assets $1,432,956 $1,779,440 $1,555,488 $2,051,309 $2,429,522

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

Executive Director

Ms. Joyce A Kullman

Joyce Kullman has served as executive director since February 2002. Prior to that she served on the VF Board of Directors for five years and was an active member of the Kansas City VF Chapter.    As executive director, she has worked to: Increase outreach and support services to patients and families worldwide. Develop educational materials for patients, families and medical professionals to create better understanding of vasculitis. Encourage medical professionals to focus on vasculitis research to increase the number of research studies and expand the areas of research. Expand the VF Medical Consultants to include more geographical areas and vasculitis centers. Establish the Scientific Advisory Board to assist with the VF Research Program. Organize biennial symposia for patients, families and medical professionals.

Number of employees

Source: IRS Form 990

Vasculitis Foundation

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Vasculitis Foundation

Board of directors
as of 02/28/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Kevin Byram, MD

Community volunteer

Term: 2023 - 2025

Jason Wadler

Community Volunteer

Don Nagle

Suzanne DePaolis

Victor James

Anisha Dua

Brian Goldman

Caz Cazanov

Jocelyn Ashford

Elizabeth Brant

Sara Baird Amodio

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 2/20/2024

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 08/03/2023

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • 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.
There are no contractors recorded for this organization.

Professional fundraisers

Fiscal year ending

SOURCE: IRS Form 990 Schedule G

Solicitation activities
Gross receipts from fundraising
Retained by organization
Paid to fundraiser