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.
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

Charts

Compensation % of Expenses Paid to Title
$186,770 5.76% Mark Stone CEO & President

Mission

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.

Highly Rated

Charity Name & State Overall Score Overall Rating
FSHD Society (MA) 91.14 four stars
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Cystic Fibrosis Foundation (MD) 94.75 four stars
Charcot-Marie-Tooth Association (PA) 99.51 four stars
Cure SMA (IL) 87.11 three stars

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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