EIN 36-3320440

Cure Sma (CSMA)

IRS 501(c) type
501(c)(3)
Num. employees
57
Year formed
1984
Most recent tax filings
2023-06-01
Description
Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA)—a disease that takes away a person’s ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
Also known as...
Cure Spinal Muscular Atrophy; Families of Sma
Total revenues
$13,668,775
2023
Total expenses
$14,203,228
2023
Total assets
$12,713,304
2023
Num. employees
57
2023

Program areas at CSMA

Individuals with Sma need specialized care and equipment, which can put enormous logistical and financial pressure on Families. Cure Sma is committed to making sure that Families have the best, most accurate information about Sma and what it means for them, and to making sure that they understand all the options and resources available to them from day-to-day care to the changing landscape of research breakthroughs and treatments. This includes our care series booklets, which are sent out as part of informational packets available at no cost to anyone who requests one. Developed by medical experts and reviewed by Families, these booklets cover topics such as breathing, nutrition, palliative care, genetics, musculoskeletal issues, and more. In addition, our equipment pool gives Families access to specialized items like car beds, strollers and bathing systems at no cost. Every newly-diagnosed family receives a care package from Cure Sma, full of toys appropriate to the child's type of the disease, impartial information for parents, and useful items suggested by other Sma parents based on their own experiences. Every new adult to the community receives a packages of special independence related items.cure Sma also educates the public about Sma, to strengthen the support available to Families. This includes directions, a biannual family support newsletter, and compass, a quarterly update on research developments
We hosted the 2023 annual Sma conference in orlando, fl, with over 3,000 registered attendees. Our annual conference is an invaluable resource for the entire Sma community. The conference is the largest in the world focused specifically on Sma. The researcher and clinical care conference attracted the top scientists and companies in the field. The community conference includes a variety of workshops, keynote sessions with leading experts, and more-plus great events such as our teen and adults with Sma socials, the family friendly researcher poster session and our meet & greet with a family fun fest. The researcher conference creates open communication of early, unpublished scientific data, accelerating the pace of research. The meeting also furthers research by building productive collaborations-including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior researchers. Community attendees have direct access to the latest information about research, and researchers have an opportunity to build personal connections with the patients who will benefit from their work.
Cure Sma focuses on three different yet equally critical and interdependent research areas: basic research, to understand the cause and biology of Sma; drug discovery, to convert basic research ideas into practical new drug candidates; and clinical & regulatory research, to provide the infrastructure to test the drug candidates. During this period Cure Sma funded five new and eight ongoing basic research grants. We also funded and executed multiple clinical and regulatory focused projects, including projects to implement and support newborn screening for Sma at the state level, to increase the number of trained Sma clinical trials sites in the us, to develop new outcome measures for Sma clinical trials, and to collect data to understand the patient experience with Sma. Currently, there are three approved drugs for Sma, with another dozen drug programs in development, including seven clinical trials. Cure Sma has funded half of all the ongoing drug programs in sma.cure Sma has expanded focus to support clinical care. The Cure Sma care center network kicked off in 2018. The goal of the Sma care center network is to provide the best healthcare for people with Sma, including offering new therapies, and to gather and disseminate new knowledge to advance the Sma standard of care for pediatric and adult persons. In 2023, the Sma care center network expanded by 5 additional centers for a total of 29 centers who received grant funding. These centers provide patient consented electronic medical record data and electronic case report forms to the Cure Sma clinical data registry. The clinical data registry is central to collecting real world data and establishing evidence to guide Sma care best practice that will be available and distributed nationally. The clinical data registry has progressively grown, and more than 1000 patients are enrolled. Additional data elements have been added to better analyze Sma treatment use. Cure Sma collaborates with state public health labs and legislatures to advocate for Sma newborn screening implementation throughout the us. Currently 48 states and Washington, dc screen newborns for Sma facilitating early presymptomatic treatment. This represents 99% of all infants born in the u.s. Cure Sma co-created two new healthcare provider enduring continuing medical education programs in addition to the in-person Cure Sma clinical care session offered in june 2023. Resources were also devoted to maintaining website listings of care centers, Sma newborn screening referral centers and treatment centers that provide fda-approved Sma treatments.

Grants made by CSMA

GranteeGrant descriptionAmount
Columbia UniversityPNCR Network$375,000
Stanford University / The Board of Trustees of the Leland Stanford Junior UniversityPNCR Network$245,000
Boston Children's HospitalPNCR Network$240,000
...and 25 more grants made totalling $2,268,968

Who funds Cure Sma (CSMA)

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Luke 181 FoundationFund Cure for Sma$500,000
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$91,090
American Online Giving FoundationGeneral Support$84,116
...and 77 more grants received totalling $1,217,854

Personnel at CSMA

NameTitleCompensation
Marline Pagan, MBAChief Operating Officer$191,950
Pamela SwenkChief of Staff Officer$117,371
Jamie Gibson, CNPChief Development Officer
Mary Schroth, MD, FAAP, FCCPChief Medical Officer$258,991
Jill JareckiChief Scientific Officer$169,943
...and 15 more key personnel

Financials for CSMA

RevenuesFYE 06/2023
Total grants, contributions, etc.$9,356,093
Program services$3,981,929
Investment income and dividends$87,007
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-1,218
Net income from fundraising events$157,392
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$87,572
Total revenues$13,668,775

Form 990s for CSMA

Fiscal year endingDate received by IRSFormPDF link
2023-062023-11-15990View PDF
2022-062022-10-18990View PDF
2021-062021-11-04990View PDF
2020-062021-02-24990View PDF
2019-062020-02-14990View PDF
...and 11 more Form 990s
Data update history
September 21, 2024
Updated personnel
Identified 9 new personnel
August 2, 2024
Received grants
Identified 12 new grant, including a grant for $84,116 from American Online Giving Foundation
May 18, 2024
Received grants
Identified 20 new grant, including a grant for $500,000 from Luke 181 Foundation
January 6, 2024
Posted financials
Added Form 990 for fiscal year 2023
January 5, 2024
Updated personnel
Identified 4 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchLobbyingFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringFundraising races, competitions, and tournamentsTax deductible donationsAccepts online donations
General information
Address
925 Busse Rd
Elk Grove Village, IL 60007
Metro area
Chicago-Naperville-Elgin, IL-IN-WI
County
Cook County, IL
Website URL
curesma.org/ 
Phone
(800) 886-1762
Facebook page
cureSMA 
Twitter profile
@curesma 
IRS details
EIN
36-3320440
Fiscal year end
June
Taxreturn type
Form 990
Year formed
1984
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
California AB-488 details
AB 488 status
May Operate or Solicit for Charitable Purposes
Charity Registration status
Current
FTB status revoked
Not revoked
AG Registration Number
116108
FTB Entity ID
None yet
AB 488 data last updated ("as-of") date
2024-10-16
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