Overview
What is The Snow Foundation?
The Snow Foundation is a nonprofit organization dedicated to supporting research, patients, and mobilizing the global Wolfram Syndrome (WS) community. Established in 2022, the foundation has become a significant contributor to WS research worldwide. Their primary mission involves providing financial support for WS research, aiming to discover novel therapies for diabetes, vision loss, hearing loss, and neurological degeneration associated with the condition. The foundation's research focus is on seeking out the best possible global research to advance drug therapies for WS patients. In 2022, they launched the WS Global Patient Registry, empowering patients to take ownership of their health information, making informed medical decisions, and facilitating continuous collaboration among the WS community. The registry also enables patients to stay updated on new treatments and technologies, thereby driving their health education and decision-making process. The Snow Foundation is actively involved in international collaborative research and treatment efforts, making it the largest independent supporter of WS research globally. This nonprofit organization serves as a collective voice for WS patients, working tirelessly towards a cure for Wolfram Syndrome.
Official website here: www.thesnowfoundation.org
Is The Snow Foundation legitimate?
The Snow Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. The Snow Foundation 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: $30,000
Professional Fundraising Fees: $0
Other Salaries and Wages: $0
For more financial information, click here
Official website here: www.thesnowfoundation.org
What is the mission statement of The Snow Foundation?
The Snow Foundation serves as an advocacy platform for individuals with Wolfram Syndrome, working towards discovering a cure and developing novel therapies for the associated symptoms such as diabetes, vision loss, hearing loss, and neurological degeneration. The foundation's primary focus lies in three key areas: research, patient support, and mobilizing the Wolfram Syndrome community. In 2022, the foundation continued its commitment to research and funding, seeking out world-class studies that could potentially advance drug therapies for Wolfram Syndrome patients.
Patients remain the primary concern for the foundation, as evidenced by the launch of the WS Global Patient Registry. This registry empowers patients by providing them with easy access to important medical information, enabling them to make informed decisions about their healthcare. It also fosters collaboration and interaction within the Wolfram Syndrome community, ultimately leading to increased opportunities for research and treatment advancements. With the registry, patients can stay updated on new drug developments and treatments without relying on institutions to share information.
As a result of the foundation's efforts, it has become the largest independent supporter of Wolfram Syndrome research globally and plays a crucial role in advancing international collaborative research and treatment initiatives. Wolfram Syndrome is a devastating form of diabetes that results in the degeneration of nerve cells in the eyes, ears, and brain, often leading to premature death in 60% of cases before the age of 40.
Official website here: www.thesnowfoundation.org
Who is the CEO of The Snow Foundation?
Stephanie Gebel is the Chairman/Ceo of The Snow Foundation. The CEO's salary of The Snow Foundation is $30,000 and their total compensation is $30,000.
Official website here: www.thesnowfoundation.org
What is the revenue of The Snow Foundation?
The Snow Foundation's revenue in 2022 was $297,516.
Official website here: www.thesnowfoundation.org
Who are the executives of The Snow Foundation and what are their salaries?
There 8 volunteers at The Snow Foundation.
Here are 6 key members and their salaries (The Snow Foundation's CEO's salary is $30,000 and their total compensation is $30,000):
- Compensation: $30,000
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.thesnowfoundation.org
Where can I find the form 990 for The Snow Foundation?
The Snow Foundation's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.thesnowfoundation.org
Learn more at the official website: www.thesnowfoundation.org
Mission Statement of The Snow Foundation
The Snow Foundation, an organization dedicated to Wolfram Syndrome (WS) patients, serves as a collective voice in the pursuit of a cure for this debilitating condition. Its mission is multifaceted, aiming to advance research, support patients, and mobilize the WS community. The foundation's primary focus on research aims to uncover potential drug therapies for WS patients, collaborating with top-tier global research institutions to drive progress.
In addition to research, The Snow Foundation places a significant emphasis on patients. In 2022, the foundation launched the WS Global Patient Registry, a groundbreaking initiative that empowers patients by providing them immediate access to the same medical information as it becomes available. This registry enables patients to take control of their healthcare decisions, informed by the latest research and developments. Furthermore, it fosters collaboration and interaction within the WS community, creating opportunities for collective advancement in the fight against this devastating disease.
The Snow Foundation's commitment to patients and research has earned it recognition as the largest independent supporter of WS research worldwide. By driving international collaborative research and treatment efforts, the foundation plays a pivotal role in the global fight against Wolfram Syndrome, a form of diabetes that leads to nerve cell degradation in the eyes, ears, and brain, often claiming the lives of patients before their 40th birthday. The foundation's mission is a testament to its unwavering dedication to improving the lives of those affected by WS, working tirelessly towards a future where this disease is no longer a death sentence.
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Impact
October, 2024
The Snow Foundation significantly impacts the Wolfram Syndrome (WS) community through focused efforts in three key areas: research, patient support, and community mobilization. By providing financial backing for groundbreaking research, the foundation positions itself as the largest independent supporter of WS research globally. Its commitment to funding aims to advance drug therapies that could transform treatment options for patients facing this debilitating condition.
A major achievement in 2022 was the launch of the WS Global Patient Registry, which empowers patients by granting them access to vital health information. This innovative platform allows individuals to stay informed about the latest developments in treatment, enabling them to make informed decisions regarding their healthcare. Patients are no longer reliant on institutional dissemination of information and can actively engage in their own medical education.
The foundation's efforts also enhance community engagement, fostering collaboration and connection among patients. This mobilization is crucial, not only for enhancing the quality of life for those affected by WS but also for driving collective advocacy towards the pursuit of a cure. By amplifying the voices of WS patients, the Snow Foundation plays a pivotal role in ensuring that their needs and concerns are central in the ongoing discourse about treatment and research advancements.
Ultimately, the Snow Foundation is dedicated to transforming the prognosis for Wolfram Syndrome patients, contributing to research that tackles diabetes, vision loss, hearing impairment, and neurodegeneration. The foundation's proactive strategies and commitment to patient empowerment signify a decisive step towards improving outcomes for those affected by this severe condition.
This information is meant to be a general summary of The Snow Foundation. 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 2022.
- Investment Income: -$1,065
- Gross Receipts: $323,882
Assets and Liabilities:
- Total Assets: $351,722
- Total Liabilities: $894
- Net Assets: $350,828
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Organization Details
Founding Year
2012
Phone
(636) 448-4134Principal Officer
Stephanie Gebel
Main Address
PO BOX 50224, CLAYTON, MO, 63105
Website
www.thesnowfoundation.orgNTEE Category
Code: T30 - Philanthropy
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