Cure Sma
Cure Sma
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More about this organization
Mission
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.
About
INDIVIDUALS WITH SMA NEED SPECIALIZED CARE AND EQUIPMENT, WHICH CAN PUT ENORMOUS EMOTIONAL, 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. 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.CURE SMA ALSO EDUCATE 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 WORKS DIRECTLY WITH CLINICIANS, MEDICAL DOCTORS, SPECIALISTS, AND SKILLED CAREGIVERS TO ENSURE THAT PATIENTS HAVE ACCESS TO THE BEST POSSIBLE CARE.
Interesting data from their 2020 990 filing
The mission of the non-profit, as stated in the filing, is “Cure sma funds and directs the leading sma research programs to develop a treatment and cure for the disease. the successful results and progress that the organization has delivered, from basic research to drug discovery to clinical trials, provide real hope for families and patients impacted by the disease. the charity has invested over $60 million in research and has been involved in funding half of all the ongoing novel drug programs for sma. cure sma is a nonprofit 501(c)(3) organization, with 34 chapters and 115,000 members and supporters throughout the united states, and is dedicated to creating a treatment and cure by funding and advancing a comprehensive research program, supporting sma families through networking, information and services, improving care for all sma patients, educating healthcare professionals and the public about sma, enlisting government support for sma, embracing all touched by sma in a caring community.”.
When referring to its tasks, they were described as: “Cure sma leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infants. cure sma funds and directs comprehensive research that drives breakthroughs in treatment and care and provides families the support they need for today.”.
- The non-profit is operating legally in the state of IL.
- The non-profit's address for the year 2020 is listed as 925 BUSSE RD, ELK GROVE VILLAGE, IL, 60007 in the filing.
- The form submitted by the non-profit organization for 2020 reports 50 employees.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $197,165.
- The organization has 22 independent voting members.
- The organization was formed in 1984.
- The organization pays $4,344,183 in salary, compensation, and benefits to its employees.
- The organization pays $1,422,300 in fundraising expenses.