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Health : Diseases, Disorders, and Disciplines

Cure SMA

Make today a breakthrough

three stars

87.11

925 Busse Road Elk Grove Village, IL 60007
tel: (800) 886-1762   Web Site
EIN: 36-3320440

Board Leadership
Richard Rubenstein
Chair

CEO
Kenneth Hobby
President

  Score
(out of 100)
Rating
Overall Score & Rating 87.11 three stars
  Financial 81.78 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 07/01/2020 and includes data from FY2019, the most recent 990 received at that time.

Founded in 1984, Cure SMA leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide families the support they need for today. Our commitment to a treatment and cure is not just about seeking solutions—it's also about creating them. We're working with some of today's sharpest minds to advance a diversity of approaches and champion the most promising discoveries and methods.

Founded in 1984, Cure SMA leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide families the support they need for today. Our commitment to a treatment and cure is not just about seeking solutions—it's also about creating them. We're working with some of today's sharpest minds to advance a diversity of approaches and champion the most promising discoveries and methods.

Impact Information

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Charting Impact

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What have and haven't you accomplished so far?

This impact information is current as of August 2020, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Financial

three stars

81.78

Accountability & Transparency

four stars

100.00

This rating was published 07/01/2020 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)
82.5%
  Administrative Expenses 6.4%
  Fundraising Expenses 10.9%
  Fundraising Efficiency $0.13
  Working Capital Ratio (years) 0.37
  Program Expenses Growth 36.0%
  Liabilities to Assets 50.8%
All data for Financial Performance Metrics calculations was provided by Cure SMA on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Cure SMA on recent 990s filed with the IRS.

Constituent Voice

Charity Navigator believes collecting feedback from the people an organization serves can make it more effective. That is why we're partnering with GuideStar by Candid to share Constituent Voice information with you. Here's how this organization is listening and learning from its constituents:
How is the organization collecting feedback?
Electronic surveys (by email, tablet, etc), Paper surveys, Constituent (client or resident, etc) advisory committees
How is the organization using feedback?
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 strengthen relationships with the people we serve
With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners
What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Describe a recent change in your organization that resulted from feedback.
Note: This organization did not answer this question
This Constituent Voice information is provided to us by Candid. At this time, Constituent Voice information published on this organization's page has no effect on its rating per our methodology.

Highly Rated

Charity Name & State Overall Score Overall Rating
Cure SMA (IL) 87.11 three stars
Cystic Fibrosis Foundation (MD) 98.21 four stars
FSH Society (MA) 93.11 four stars
Parent Project Muscular Dystrophy (NJ) 90.04 four stars
Charcot-Marie-Tooth Association (PA) 95.88 four stars

Compare These Charities (Highly Rated)

REVENUE  
Contributions  
   Contributions, Gifts & Grants $8,454,775
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $852,437
   Related Organizations $0
   Government Grants $0
Total Contributions $9,307,212
   Program Service Revenue $2,007,413
Total Primary Revenue $11,314,625
   Other Revenue $3,004,362
TOTAL REVENUE $14,318,987
   
EXPENSES  
   Program Expenses $11,696,028
   Administrative Expenses $1,003,494
   Fundraising Expenses $1,422,300
TOTAL FUNCTIONAL EXPENSES $14,121,822
   
Payments to Affiliates $0
Excess (or Deficit) for the year $197,165
   
Net Assets $5,104,806

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 (Basic, Drug Recovery, Clinical and Regulatory) $5,155,498 44.1%
Patient & Family Support $3,313,869 28.3%
SMA Conference $3,226,661 27.6%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-06 07/01/2020 87.11 three stars
2018-06 06/01/2019 90.45 four stars
2017-06 04/01/2018 84.58 three stars
2016-06 05/01/2017 79.77 two stars
2015-06 06/01/2016 81.02 three stars
 
CN 2.0
2015-06 04/01/2016 83.02 three stars
2014-06 11/01/2015 80.58 three stars
2014-06 09/01/2015 79.97 two stars
2013-06 06/01/2014 83.61 three stars
2012-06 05/01/2013 79.40 two stars
2011-06 06/01/2012 76.15 two stars
2010-06 09/20/2011 68.76 one star
 
CN 1.0
2009-06 11/01/2010 74.56 two 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 36-3320440
Name in IRS Master File FAMILIES OF SMA
NTEE Code G11
NTEE Classification Single Organization Support
NTEE Type Diseases, Disorders, Medical Disciplines
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (408) Community service organization
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, 1985
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End June
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • June, 2018
  • June, 2017
  • June, 2016
  • June, 2015
  • June, 2014
Compensation % of Expenses Paid to Title
$231,320 1.63% Kenneth Hobby President

Highly Rated

Charity Name & State Overall Score Overall Rating
Cure SMA (IL) 87.11 three stars
The Boomer Esiason Foundation (NY) 93.39 four stars
Can Do Multiple Sclerosis (CO) 96.16 four stars
Parent Project Muscular Dystrophy (NJ) 90.04 four stars
Friedreich's Ataxia Research Alliance (PA) 97.38 four stars

Compare These Charities (Highly Rated)

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Constituent Voice

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Charity Contact Info

Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
tel: (800) 886-1762
fax: (847) 367-7623
EIN: 36-3320440

Visit Web Site

Board Leadership

Richard Rubenstein
Chair

CEO

Kenneth Hobby
President

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