EIN 52-1375827

National Scleroderma Foundation

IRS 501(c) type
501(c)(3)
Num. employees
33
Year formed
1993
Most recent tax filings
2023-06-01
Description
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. Their mission is support, education and research.
Also known as...
Scleroderma Foundation
Total revenues
$6,915,898
2023
Total expenses
$6,461,742
2023
Total assets
$12,897,422
2023
Num. employees
33
2023

Program areas at National Scleroderma Foundation

A relentless force in finding a cure and improving the lives of people affected by Scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with Scleroderma, their families and support networks. Supported by a network of thousands of individuals across the united states, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome Scleroderma forever. Support: the Foundation serves people living with Scleroderma, as well as their caregivers and family members by providing access to support groups. In the wake of the pandemic, the Foundation pivoted from in-person to virtual community support, allowing for members of the Scleroderma community to connect no matter where they were in the country. This also allowed for the creation of more targeted, topical support groups such as one for men, which make up just 20% of the population impacted by Scleroderma, and bipoc, as well as young adults. Education: the Foundation provides education about how to live better with Scleroderma for those affected by the disease, as well as their caregivers, families and support networks. The Foundation is also a cme and cne provider, educating healthcare providers about signs and symptoms, timely diagnosis, and cutting-edge treatments and therapies. The National Scleroderma conference attracts more than 500 participants annually. Due to the ongoing pandemic, the Foundation held a virtual conference in fy 2023, which provided community support, world class education, and networking opportunities for the community via webinars. The webinars offered education and networking opportunities for people living with Scleroderma, caregivers, family members, and friends. In addition, the webinars serve as an excellent resource for physicians and other healthcare professionals, who also need comprehensive information about the disease.
Research:in fy 2023, the Foundation made a commitment of $1.8 million to fund research. This funding aims to stimulate and support investigations into better understanding the mechanisms that cause the disease, how to prevent and accurately diagnosis and treat the disease, and ultimately find a cure for Scleroderma. Each award is $200,000 spread over multiple years. In fy 2023, six awards were two-year established investigator awards, and three awards were three-year new investigator awards. New investigator awards are intended to help emerging scientists gather sufficient data to demonstrate the value of their area of investigation and attract larger funding from other sources. The Foundation's peer reviewed research grants program prioritizes scientific merit and is administered by the Foundation's research committee. This committee, composed of Scleroderma experts from across the country, makes funding recommendations to the board of directors annually after a rigorous peer review process.the peer-review research committee is composed of highly respected scientific experts who review, critique, and rank all applications based on the National institutes of health's ranking system. Only projects of significant scientific merit are funded. Each grant application contains very specific eligibility and review criteria. Details regarding these requirements are available at www.scleroderma.org. All applications undergo rigorous peer review and are scored and ranked according to the review criteria and overall merit of the proposal. Peer review rankings are sent to the Foundation's research committee for qualification before being presented to the Foundation board of directors for final approval of funding. After the awards are made, all recipients are required to complete funding contracts with institutional sign-off and must also submit annual reports on their progress. All reports are reviewed by the Foundation's research committee to ensure compliance with programmatic, scientific, and fiscal and administrative polices and requirements.

Grants made by National Scleroderma Foundation

GranteeGrant descriptionAmount
Trustees of Boston UniversityResearch$200,000
Foundation for the National Institute of Health (FNIH)Research$200,000
Benaroya Research Institute at Virginia MasonResearch$200,000
...and 3 more grants made

Who funds National Scleroderma Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Scleroderma Foundation of Greater ChicagoFund Research Projects$83,780
Scleroderma Foundation Tri-State ChapterDonation Restricted To Research$75,000
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$60,505
...and 56 more grants received totalling $498,497

Personnel at National Scleroderma Foundation

NameTitleCompensation
Mary J WheatleyChief Executive Officer$226,252
Michael B HydeChief Operating Officer and Chief Financial Officer$150,589
Steven R. SookikianDirector of Communications / Communications Officer
Kerri ConnollyNat Director of Programs and Serv. / Director of Programs and Services$102,480
Lauren GalvanAnnual Giving and Stewardship Manager
...and 7 more key personnel

Financials for National Scleroderma Foundation

RevenuesFYE 06/2023
Total grants, contributions, etc.$6,057,608
Program services$0
Investment income and dividends$203,947
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$272,657
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$381,686
Total revenues$6,915,898

Form 990s for National Scleroderma Foundation

Fiscal year endingDate received by IRSFormPDF link
2023-062024-01-18990View PDF
2022-062022-12-15990View PDF
2021-062022-01-27990View PDF
2020-062021-04-06990View PDF
2019-062020-06-26990View PDF
...and 10 more Form 990s
Data update history
May 22, 2024
Updated personnel
Identified 2 new personnel
May 20, 2024
Used new vendors
Identified 1 new vendor, including
May 18, 2024
Received grants
Identified 13 new grant, including a grant for $83,780 from Scleroderma Foundation of Greater Chicago
October 25, 2023
Received grants
Identified 5 new grant, including a grant for $25,000 from Albert H and Jane D Nahmad Foundation
August 11, 2023
Posted financials
Added Form 990 for fiscal year 2021
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringFundraising races, competitions, and tournamentsTax deductible donations
General information
Address
300 Rosewood Dr 105
Danvers, MA 01923
Metro area
Boston-Cambridge-Newton, MA-NH
County
Essex County, MA
Website URL
scleroderma.org/ 
Phone
(978) 463-5843
Facebook page
SclerodermaUS 
Twitter profile
@scleroderma 
IRS details
EIN
52-1375827
Fiscal year end
June
Taxreturn type
Form 990
Year formed
1993
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G50: Nerve, Muscle, and Bone Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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