Medical Research

The Snow Foundation

Rare Diseases...Common Problems

aka The Snow Foundation

Clayton, MO

Mission

The Snow Foundation is a collective voice for Wolfram syndrome patients, working towards a cure for Wolfram syndrome and developing novel therapies for diabetes, vision loss, hearing loss, and neurodegeneration.

Ruling Year

2013

Founder/Chairman

Stephanie Gebel

Main Address

P.O. Box 50224

Clayton, MO 63105 USA

Formerly Known As

The Jack & JT Snow Scientific Research Foundation

Keywords

diabetes, rare disease, wolfram syndrome, hearing loss, neurodegeneration, vision loss

EIN

45-5308117

 Number

4596203846

Cause Area (NTEE Code)

Specifically Named Diseases Research (H80)

Specifically Named Diseases (G80)

Health - General and Rehabilitative N.E.C. (E99)

IRS Filing Requirement

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Social Media

Programs + Results

What we aim to solve

Wolfram research has been slow moving and fractured due to the international nature of research, lack of available grants, few WS specific conferences, lack of data sharing, and no US or global alliance for the disease. Although in its early years, The Snow Foundation has quickly become the single largest private supporter of Wolfram research. This simple fact highlights the woeful state of awareness, research, programs and funds to fight and treat Wolfram syndrome. Most investigators are drawn to the monogenic diabetes aspect of Wolfram syndrome as a model for more common forms of diabetes. However, the far less studied neurological symptoms are the most debilitating to patient quality and length of life. Furthermore, because the pattern There is no centralized network of research or data regarding Wolfram syndrome. Hence, the Snow Foundation’s pillars – Accelerate, Connect and Mobilize the WS community – are fundamentally linked to the creation of a global network.

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Annual Wolfram Syndrome Medical Clinic

Wolfram Syndrome Resarch Laboratory

Patient Advocacy/Programs

Online Network

Where we work

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

Snow has already mapped out a global network model. With increased financial support, we will: 1. Create strong online connectivity: Two Secure Data Sites (patients & doctors), Registry, Doctor/Patient Chat, Breaking News, Research Blog/Pipeline, Grant Announcements. 2. Enable researchers to access and share data with other medical professionals working to better understand, treat, and establish a cure for Wolfram syndrome and Wolfram-like diseases. 3. Enable patients and families to easily network and share the best treatment practices. 4. Bring together patients, families and medical professionals to meet, share and learn from one another, and become motivated to achieve progress, via conferences held in St. Louis and eventually on each US coast. 5. Shorten the time between symptom identification and correct disease diagnosis by expanding awareness and access to data. 6. Increase quality, diversity, amount, and availability of disease data to strengthen research funding requests and results evaluation. 7. Increase research dollars. Leader: Stephanie Snow Gebel – In 2010, Stephanie’s and Barclay’s five-year-old daughter, Raquel, was diagnosed with Wolfram syndrome, a terminal disease with no cure and little data. Stephanie began The Snow Foundation. Nine years after Raquel was diagnosed, Stephanie’s unique ability to bring together medical leaders, patients, families, and resources has moved Snow to the largest private source of support for Wolfram research – and is fueling better treatment, management therapies, health care delivery enhancements, information sharing, and peer-to-peer patient and medical networking platforms. Stephanie holds a bachelor’s degree in Sociology and Exercise Sports Science from the University of Arizona. Achievements: • Provided area and visiting patients/families with services to better navigate th

There are myriad possible solutions to Wolfram syndrome, and researchers agree that these solutions will likely be applicable to other common neurodegenerative diseases and forms of diabetes. By connecting patients, families, medical researchers and clinicians around the world – and sharing treatments, ideas, reagents, pitfalls, and successes – it is expected that solutions will be achieved more quickly, more accurately, and with exponentially greater results!

External Reviews

Photos

Financials

The Snow Foundation

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Operations

The people, governance practices, and partners that make the organization tick.

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Yes

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Sexual Orientation

This organization reports that it does not collect this information for Board Members.

Disability

This organization reports that it does not collect this information for Board Members.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity