Overview
What is Families Of Spinal Muscular Atrophy?
Cure SMA, also known as Families of Spinal Muscular Atrophy, is a nonprofit organization based in Elk Grove Village, Illinois. Its mission is to empower individuals with Spinal Muscular Atrophy (SMA) to live independent, successful, and fulfilling lives. They provide necessary resources and support for families impacted by SMA, with a focus on supplying accurate and up-to-date information. They offer care series booklets on various topics like breathing, nutrition, and palliative care, as well as equipment access through their Equipment Pool at no cost. Every newly-diagnosed family receives a care package filled with essential items and resources. Cure SMA's efforts extend beyond the community, advocating for public awareness and support.
Official website here: www.curesma.org
Is Families Of Spinal Muscular Atrophy legitimate?
Families Of Spinal Muscular Atrophy is a legitimate nonprofit organization registered as a 501(c)(3) entity. Families Of Spinal Muscular Atrophy submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Here are some key statistics you may want to consider:
Executive Compensation: $934,245
Professional Fundraising Fees: $0
Other Salaries and Wages: $3,704,349
For more financial information, click here
Official website here: www.curesma.org
What is the mission statement of Families Of Spinal Muscular Atrophy?
Cure SMA is dedicated to empowering individuals affected by Spinal Muscular Atrophy (SMA) to live independent, successful, and fulfilling lives. The organization strives to create a welcoming community where every individual is heard. Cure SMA offers practical support programs for its community and advocates for their needs. They fund and direct comprehensive research aimed at driving breakthroughs in treatment, and work towards advancing access to high quality care for those with SMA. The organization's determination does not wane until a cure is found.
Official website here: www.curesma.org
Who is the CEO of Families Of Spinal Muscular Atrophy?
Kenneth Hobby is the Director of Families Of Spinal Muscular Atrophy.
Official website here: www.curesma.org
What is the revenue of Families Of Spinal Muscular Atrophy?
Families Of Spinal Muscular Atrophy's revenue in 2023 was $13,668,775.
Official website here: www.curesma.org
Who are the executives of Families Of Spinal Muscular Atrophy and what are their salaries?
The average compensation at Families Of Spinal Muscular Atrophy during 2023 was $81,379. There are 57 employees and 6,600 volunteers at Families Of Spinal Muscular Atrophy.
Here are 30 key members and their salaries:
- Kenneth Hobby (President)
- Mary Schroth (Chief Medical Officer)
- Marline Pagan (Chief Operating Officer)
- Colleen Mccarthy O'Toole (Sr Vice President, Community Support)
- Maynard Friesz (Vice President, Policy & A)
- Jackie Glascock (Vice President Of Research)
- Michelle Castle (Vice President Of Compliance Development)
- Pamela Swenk (Chief Of Staff Officer)
- Allyson Henkel (Director)
- Amy Medina (Director)
- Annie Kennedy (Director (Through 12/31/22))
- Brad Nunemaker (Treasurer) [Trustee/Director]
- Brian Snyder (Director)
- Corey Braastad (Director)
- Edmund Lee (Director)
- Gillian Mullins (Secretary) [Trustee/Director]
- Jaclyn Greenwood (Director)
- Kelly Cole (Director (Through 3/7/23))
- Kelly Jankowski (Director)
- Nick Farrell (Board Chair) [Trustee/Director]
- Peter Statile (Director)
- Rob Lockwood (Director)
- Robert Graham (Director)
- Shannon Shryne (Director (Through 12/31/22))
- Shannon Zerzan (Director)
- Spencer Perlman (Director)
- Tom Murray (Director)
- Bakri Elsheikh (Director)
- Diana Castro (Director)
- Kaleen Robinson (Director)
Official website here: www.curesma.org
Where can I find the form 990 for Families Of Spinal Muscular Atrophy?
The Families Of Spinal Muscular Atrophy’s most recent form 990 was submitted in 2023 and can be accessed here
Official website here: www.curesma.org
Learn more at the official website: www.curesma.org
Mission Statement of Families Of Spinal Muscular Atrophy
Cure SMA, a leading organization for individuals affected by Spinal Muscular Atrophy (SMA), is dedicated to empowering every person in the community to live independent, successful, and fulfilling lives. The nonprofit strives to build a welcoming environment where each individual is heard and valued. Cure SMA offers practical support programs for its members and advocates for their needs. Furthermore, the organization invests in comprehensive research to drive breakthroughs in treatment and advances access to high-quality care. Cure SMA's perseverance knows no bounds, as they are determined to find a cure for SMA.
The mission of Cure SMA is twofold. Firstly, they focus on the empowerment of individuals with SMA, enabling them to lead lives of independence, success, and fulfillment. Secondly, they aim to create a community where each person is welcomed and their voices are heard. To accomplish these goals, Cure SMA provides essential support programs for its community and advocates for their needs. Additionally, they fund and direct comprehensive research efforts to unlock advancements in SMA treatment and drive the development of a cure. With unwavering commitment, Cure SMA continues to champion the cause and improve the lives of those affected by SMA.
Impact
This information is meant to be a general summary of Families Of Spinal Muscular Atrophy. Please take the time to review official sources before making any decisions based upon the content provided here.
Thursday, August 15, 2024
Families Of Spinal Muscular Atrophy (Cure SMA) has a profound impact on individuals and families affected by Spinal Muscular Atrophy (SMA). By providing practical support programs, advocating for their needs, funding comprehensive research, and advancing access to high-quality care, Cure SMA empowers those with SMA to lead independent, successful, and fulfilling lives.
Cure SMA's initiatives, such as the Care Series booklets and equipment pool, ensure families have the best information about SMA and access to specialized equipment at no cost. The Care Packages, tailored for newly diagnosed families and adults entering the community, offer essential resources and support. Additionally, through education and resources like the Compass newsletter, Cure SMA raises awareness about SMA, strengthening support available to families.
Overall, Families Of Spinal Muscular Atrophy's commitment to improving the lives of those with SMA through support, advocacy, and research is making a significant impact, providing hope and valuable assistance to individuals and families facing the challenges of this disease.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2023.
- Assets and Liabilities:
Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
ANNUAL CONFERENCE
Revenue
$2,166,179
INDUSTRY SPONSORED RESEARCH
Revenue
$1,138,250
SUMMIT OF STRENGTH SYMPOSIUMS
Revenue
$677,500
Organization Details
Founding Year
1984
Phone
(847) 709-6318
Principal Officer
Kenneth Hobby
Main Address
925 BUSSE RD, ELK GROVE VILLAGE, IL, 60007
Website
www.curesma.org
NTEE Category
Code: G110 - Disease
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