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Health : Diseases, Disorders, and Disciplines

FSHD Society

Facioscapulohumeral muscular dystrophy

four stars

91.14

450 Bedford Street Lexington, MA 02420
tel: (781) 301-6060   Web Site
EIN: 52-1762747

Board Leadership
James A. Chin
Chairman

CEO
Mark Stone
CEO & President

  Score
(out of 100)
Rating
Overall Score & Rating 91.14 four stars
  Financial 87.48 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 11/01/2020 and includes data from FY2019, the most recent 990 received at that time.

The FSHD Society is the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. We are solely dedicated to treating and curing FSHD through basic, translational and clinical research. We empower scientists by ensuring access to patients, resources and funds for FSHD research and development. The FSHD Society empowers patients by ensuring them a voice to convey what it is like to live with muscular dystrophy. We engage and support tens of thousands of patients and their families and friends in thousands of communities worldwide. FSHD is one of the nine primary types of muscular dystrophy, with a major symptom of the progressive weakening and loss of skeletal muscles.

The FSHD Society is the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. We are solely dedicated to treating and curing FSHD through basic, translational and clinical research. We empower scientists by ensuring access to patients, resources and funds for FSHD research and development. The FSHD Society empowers patients by ensuring them a voice to convey what it is like to live with muscular dystrophy. We engage and support tens of thousands of patients and their families and friends in thousands of communities worldwide. FSHD is one of the nine primary types of muscular dystrophy, with a major symptom of the progressive weakening and loss of skeletal muscles.

Financial

three stars

87.48

Accountability & Transparency

four stars

100.00

This rating was published 11/01/2020 and includes data from FY2019, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
75.2%
  Administrative Expenses 11.8%
  Fundraising Expenses 12.8%
  Fundraising Efficiency $0.10
  Working Capital Ratio (years) 2.05
  Program Expenses Growth 6.8%
  Liabilities to Assets 11.9%
All data for Financial Performance Metrics calculations was provided by FSHD Society on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by FSHD Society on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
FSHD Society (MA) 91.14 four stars
Cystic Fibrosis Foundation (MD) 94.75 four stars
American Brain Foundation (MN) 94.80 four stars
Cure SMA (IL) 87.11 three stars
Parent Project Muscular Dystrophy (NJ) 96.46 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $4,539,565
   Federated Campaigns $8,904
   Membership Dues $0
   Fundraising Events $394,427
   Related Organizations $0
   Government Grants $0
Total Contributions $4,942,896
   Program Service Revenue $202,448
Total Primary Revenue $5,145,344
   Other Revenue $123,172
TOTAL REVENUE $5,268,516
   
EXPENSES  
   Program Expenses $2,492,690
   Administrative Expenses $324,483
   Fundraising Expenses $423,187
TOTAL FUNCTIONAL EXPENSES $3,240,360
   
Payments to Affiliates $0
Excess (or Deficit) for the year $2,028,156
   
Net Assets $5,717,438

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Research $1,889,227 75.8%
Patient Advocacy and Education $603,463 24.2%

Ratings History
FSHD Society has received 13 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 11/01/2020 91.14 four stars
2018-12 09/03/2019 93.11 four stars
2017-12 09/01/2018 95.03 four stars
2016-12 12/01/2017 96.46 four stars
2015-12 12/01/2016 98.23 four stars
2014-12 06/01/2016 98.23 four stars
 
CN 2.0
2014-12 12/01/2015 99.40 four stars
2013-12 07/01/2015 99.10 four stars
2013-12 06/01/2015 97.03 four stars
2012-12 04/01/2014 98.40 four stars
2011-12 04/01/2013 98.50 four stars
2010-12 03/01/2012 96.82 four stars
2009-12 09/20/2011 94.85 four stars
 
CN 1.0
2009-12 05/01/2011 98.02 four stars
2008-12 07/01/2010 90.05 four stars
2007-12 05/01/2009 97.93 four stars
2006-12 05/01/2008 84.19 three stars
2005-12 10/01/2006 82.41 three stars
2004-12 11/01/2005 88.27 three stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 52-1762747
Name in IRS Master File FSHD SOCIETY
NTEE Code H20
NTEE Classification Birth Defects, Genetic Diseases Research
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (161) Scientific research (diseases)
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date February, 1992
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2018
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
Compensation % of Expenses Paid to Title
$186,770 5.76% Mark Stone CEO & President

Highly Rated

Charity Name & State Overall Score Overall Rating
FSHD Society (MA) 91.14 four stars
Epilepsy Foundation of Minnesota (MN) 92.20 four stars
The Boomer Esiason Foundation (NY) 90.36 four stars
Friedreich's Ataxia Research Alliance (PA) 98.23 four stars
Cystic Fibrosis Foundation (MD) 94.75 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

FSHD Society
450 Bedford Street
Lexington, MA 02420
tel: (781) 301-6060
fax: (781) 862-1116
EIN: 52-1762747

Visit Web Site

Board Leadership

James A. Chin
Chairman

CEO

Mark Stone
CEO & President

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