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
What are the reviews and ratings of this charity?
Charity Navigator Rating: 95% (Four-Star out of Four Star rating)
Families of Spinal Muscular Atrophy (now known as Cure SMA) has received an impressive Four-Star rating from Charity Navigator, indicating a high level of accountability and financial management. With a score of 95% in Accountability & Finance and a perfect 100% in Culture & Community, the organization demonstrates strong governance, transparency, and effective program expense management, with nearly 80% of expenses directed toward programs.
User feedback highlights the organization's significant impact in the SMA community, with testimonials from volunteers showing deep personal connections and the positive influence of its efforts on families affected by SMA. The organization is praised for its fundraising accomplishments, having raised substantial amounts for research, leading to numerous active drug programs and clinical trials aimed at finding a cure.
However, while the ratings and feedback are overwhelmingly positive, some limitations may exist, such as the organization's reliance on fundraising and the need to continually innovate in treatment options. Overall, Families of Spinal Muscular Atrophy is recognized for its effective advocacy and research support, making it a vital resource for families dealing with this challenging condition.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about Families Of Spinal Muscular Atrophy?
96% of 433 reviewers on Facebook recommend Families Of Spinal Muscular Atrophy. Here is a summary of their reviews:
The overall sentiment towards the organization is highly positive, with many expressing gratitude for the support and assistance they receive. The nonprofit is actively recognized for its efforts in helping individuals and families affected by spinal muscular atrophy, with many users noting the impactful resources and community it provides.
Though there are individual stories of personal struggles, like that of a disabled person seeking help, the common theme is one of appreciation for the organization's mission. Families see the nonprofit as a lifeline, providing hope and vital resources for those in need. Overall, the organization appears to genuinely deliver on its promise to support families affected by spinal muscular atrophy.
This AI summary has been generated from reviews found on Facebook.
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.
Heare 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 6600 volunteers at Families Of Spinal Muscular Atrophy.
Here are 30 key members and their salaries:
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Official website here: www.curesma.org
Where can I find the form 990 for Families Of Spinal Muscular Atrophy?
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.
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Impact
October, 2024
Families of Spinal Muscular Atrophy (SMA) plays a crucial role in improving the lives of individuals and families affected by this debilitating condition. Their impact is profound, as they empower families to lead independent, successful, and fulfilling lives despite the challenges posed by SMA.
One key area of focus is providing practical support and resources for families. The organization recognizes the logistical and financial pressures that come with the specialized care and equipment needed for individuals with SMA. To address this, they offer comprehensive information and tools necessary for navigating day-to-day care. Their care series booklets, developed by medical experts and reviewed by families, cover essential topics such as breathing, nutrition, genetics, and palliative care, ensuring families have access to accurate information.
Additionally, Families of SMA operates an equipment pool, supplying families with specialized items like car beds and bathing systems at no cost. Newly diagnosed families benefit from care packages filled with toys, educational resources, and practical items suggested by other SMA parents, fostering a sense of community and support among families.
The organization also prioritizes public education about SMA, enhancing understanding and support for affected families. Through newsletters and quarterly updates on research developments, they keep the community informed and engaged.
Their unwavering commitment to funding and directing research initiatives is pivotal in driving breakthroughs in treatment and advancing access to high-quality care. This multifaceted approach ensures that families are not only supported in the present but are also hopeful for future advancements in care and ultimately a cure. Families of SMA stands as a beacon for those affected by the disease, fostering a community where every individual is heard and welcomed.
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.
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.
- Investment Income: $85,789
- Program Service Revenue: $3,981,929
- Gross Receipts: $14,494,484
Assets and Liabilities:
- Total Assets: $12,713,304
- Total Liabilities: $5,920,573
- Net Assets: $6,792,731
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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) 709-6318Principal Officer
Kenneth Hobby
Main Address
925 BUSSE RD, ELK GROVE VILLAGE, IL, 60007
Website
www.curesma.orgNTEE Category
Code: G110 - Disease
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