International Scleroderma Network
Nonprofit profile at a glance
- EIN
- 260039428
- IRS 990-EZ coverage
- 2011–2020
- Forms available
- Form 990-EZ 2020, Form 990-N 2010
- Location
- Edina, MN, USA
- Phone
- 7607076277
- Rating
- 83
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases
Reported finances
- Revenue
- $1,506
- Expenses
- $4,250
- Assets
- $1,583
- Liabilities
- $1,510
Source: IRS Form 990-EZ. Selected filing: tax year 2020. Amounts in USD.
Leadership & pay
4 people listed
Executive titles in this filing
- Shelley Ensz (Founder and President)
People named in this filing
- Shelley Ensz (Founder and President)
- Marcus Sidney Strong (Board Member)
- Sandra Strong (Board Member)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990-EZ. Selected filing: tax year 2020. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
We provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
What it reported doing in 2020
Support, Education and Awareness. Accomplishments included attaining a world ranking of 36,788 and a current U.S. ranking in the top 6,000 of literally billions of websites, for our SCLERO.ORG web site, as measured by ranking.com. We remained the world leader in this field of expertise by both site traffic and delivery of well-respected content and services. We added well over 300 pages, while continually removing out-dated content and links. We invested in improved web site quality and link checking software. We decreased page download speed by 8% overall. We updated the entire web site to be Mobile-Friendly. We hired SEO assistance, and a Scleroderma Expert List Coordinator. We further developed of our state-of-the-art Sclero Forums, Blogs and Videos platform, doing a major upgrade which included two software upgrades and five specialty mods. Additional project achievements include daily updating of our sophisticated internal site search engine, and daily newsfeeds direct from our forums. We recreated our sitemaps weekly and resubmitted them to search engines to make fresh content instantly accessible by users. These features increased the visibility and availability of stellar, up-to-the-minute research news about scleroderma and PAH to both interested subscribers and to the public at large. We continued to distribute our Voices of Scleroderma trilogy book series throughout the world. We maintained our 24 hour a day scleroderma and PAH telephone hotline, and provided both email and postal mail support services to over 1,000 legitimate hotline inquirers. Over $250,000 of volunteer effort was also contributed in support of our programs by a team of over 70 worldwide virtual volunteers who sustain the backbone of our organization.
Operating model
- Revenue model
- Donor-supported. 92% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Expenses are high relative to revenue and program spending has declined or grown slowly.
Rating breakdown
- Financial Efficiency: 99
- Transparency & Controls: 82
- Sustainability: 16
- Growth: 0
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 100%; rating input score 100
- Program expense ratio: 98.2%; rating input score 98
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 51st percentile among comparable filings
- Major donor itemization: Limited
Sustainability
- Operating margin: -182.2%; rating input score 8; 8th percentile among comparable filings
- Total-asset coverage ratio: 0.37; rating input score 17; 17th percentile among comparable filings
- Liabilities to assets ratio: 0.95; rating input score 6; 6th percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 56; 56th percentile among comparable filings
Growth
- Program expense growth: -12.8% per year; rating input score 0; 32nd percentile among comparable filings
- Revenue growth: -18.8% per year; rating input score 0; 21st percentile among comparable filings
- Asset growth: -12.1% per year; rating input score 0; 14th percentile among comparable filings
Details
- Where the money goes: 100% of revenue deployed · 98.2% of spending went to programs
- Governance: Filed governance answers
- Accomplishments: 1 filed program accomplishment · $4K in reported program spending
- Leadership: top reported pay $0 · 4 people listed
- Consistency: 9 of 9 current checks pass
- Schedules: 2 filed schedules
- Filing history: 10 filing years from 2011 to 2020
- Contacts: How to reach this organization
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
Grant-readiness screening is separate from the live rating, not a measure of program quality. Review the source records before making a grant decision.
- High — Sustainability: Operating margin scored 8/100.
- High — Growth: Program expense growth scored 0/100.
- High — Growth: Revenue growth scored 0/100.
- High — Sustainability: Total-asset coverage ratio scored 17/100.
- High — Growth: Asset growth scored 0/100.
- High — Sustainability: Liabilities to assets ratio scored 6/100.
- Review — Sustainability: Officer compensation ratio scored 56/100.
- High — Grant Readiness: Automatic revocation: this organization had its federal tax-exempt status automatically revoked.