Families Of Sma

Organization Overview

Families Of Sma, operating under the name Cure Sma, is located in Elk Grove Village, IL. The organization was established in 1985. According to its NTEE Classification (G11) the organization is classified as: Single Organization Support, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 06/2023, Cure Sma employed 57 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Cure Sma is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 06/2023, Cure Sma generated $13.7m in total revenue. This organization has experienced exceptional growth, as over the past 8 years, it has increased revenue by an average of 10.6% each year . All expenses for the organization totaled $14.2m during the year ending 06/2023. While expenses have increased by 11.7% per year over the past 8 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, Cure Sma has awarded 189 individual grants totaling $17,727,723. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2023

Describe the Organization's Mission:

Part 3 - Line 1

CURE SMA LEADS THE WAY TO A WORLD WHERE EVERYONE IMPACTED BY SPINAL MUSCULAR ATROPHY (SMA) IS EMPOWERED TO LEAD INDEPENDENT, SUCCESSFUL, AND FULFILLING LIVES. WE STRIVE TO CREATE A COMMUNITY WHERE EVERY INDIVIDUAL IS HEARD AND FEELS WELCOMED. CURE SMA PROVIDES PRACTICAL SUPPORT PROGRAMS FOR OUR COMMUNITY AND ADVOCATES FOR THEIR NEEDS. WE FUND AND DIRECT COMPREHENSIVE RESEARCH THAT DRIVES BREAKTHROUGHS IN TREATMENT, AND WE ADVANCE ACCESS TO HIGH QUALITY CARE. WE WILL NOT STOP UNTIL WE HAVE A CURE.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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


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.


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.


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Board, Officers & Key Employees

Name (title)Compensation
Allyson Henkel
Director
$0
Amy Medina
Director
$0
Annie Kennedy
Director (through 12/31/22)
$0
Brad Nunemaker
Treasurer
$0
Brian Snyder
Director
$0
Corey Braastad
Director
$0

Outside Vendors & Contractors

Vendor Name (Service)Compensation
Western Institutional Review Board Inc
Research
$136,271
Faegre Drinker Biddle And Reath Llp
Legal
$126,030
View All Vendors

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$3,114,636
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$6,241,457
Noncash contributions included in lines 1a–1f $303,437
Total Revenue from Contributions, Gifts, Grants & Similar$9,356,093
Total Program Service Revenue$3,981,929
Investment income $87,007
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales -$1,218
Net Income from Fundraising Events $157,392
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $13,668,775

Grants Awarded

Over the last fiscal year, Families Of Sma has awarded $2,372,768 in support to 30 organizations.

Grant RecipientAmount

GILLETTE CHILDREN'S SPECIALTY HEALTHCARE

PURPOSE: CARE CENTER NETWORK

$75,000

UNIVERSITY OF UTAH

PURPOSE: CARE CENTER NETWORK

$41,400

AR CHILDREN'S RESEARCH INSTITUTE

PURPOSE: CARE CENTER NETWORK

$39,600

YALE UNIVERSITY

PURPOSE: CARE CENTER NETWORK

$25,500

UNIVERSITY OF ROCHESTER

PURPOSE: CARE CENTER NETWORK

$25,200

CHILDREN'S NATIONAL MEDICAL CENTER

PURPOSE: CARE CENTER NETWORK

$42,000
View Grant Profile

Peer Organizations

Organization NameAssets
Families Of Sma
Elk Grove Village, IL
$13,668,775
Nlw Inc
Indianapolis, IN
$14,707,335
Luther Manor Foundation Inc
Wauwatosa, WI
$612,731
St Jude Runners Association
Peoria, IL
$3,290,417
Womens Dermatologic Society
Milwaukee, WI
$1,142,379
Indiana Institute For Global Health Inc
Indianapolis, IN
$928,566
Wellness House Foundation Inc
Hinsdale, IL
$315,971
Iowa Public Health Association Foundation
Des Moines, IA
$752,120
American Association Of Clinical Urologists Inc Mamco
East Dundee, IL
$327,466
International Association Of Oral And Maxillofacial Surgeons Fdn
Chicago, IL
$291,999
Friends Of The Epilepsy Foundation Of Greater Chicago
Chicago, IL
$374,729
In Cure Of Ms
Carmel, IN
$350,681
Student Osteopathic Medical Association Foundation
Chicago, IL
$0
Soap Endowment Fund
Lexington, KY
$175,267
Sparta Area Cancer Support Inc
Sparta, WI
$0
Advocates For The American Osteopathic Association
Chicago, IL
$84,883
Instep Inc
Greenwood, IN
$0
Fred G Aronson Decd Fbo American Cancer Society
Milwaukee, WI
$16,456
Foundation Of The College Of Diplomates Of The Abpd
Chicago, IL
$0
Gustav L Harris Tr Uw 093920c
Milwaukee, WI
$18,233
The Association Of The Jewish Blind Of Chicago
Chicago, IL
$36,663
Friends Of Carbone Cancer Center Inc
Fitchburg, WI
$0
Ball Brother Glass Manufacturing Co Tr For Delaware Co Tuberculosis As
Evansville, IN
$44,593
Edwin J Hoffritz Tr U Par 6 Uw Fbo Ny Hospital Opthalmology Dept
Chicago, IL
$6,847
Susters Inc
Indianapolis, IN
$0

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