The Ryr 1 Foundation
The Ryr 1 Foundation
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About this organization
Mission
The RYR-1 Foundation's mission is to support research leading to an effective treatment or a cure for RYR-1-related diseases by: 1) Research: We make grants to researchers interested in RYR-1-related diseases and developing a patient registry. 2) Medical professional education: The vast majority of medical professionals have never heard of RYR-1-related diseases. We raise awareness through resources on our website, as well as direct meetings with medical professionals around the world. 3) Patient/family support and advocacy: We serve as a resource for patients and their families through our website, other forms of social media, and biennial international family conferences.
About
Patient outreach and education - The foundation raises awareness through resources on its website, including the latest medical literature, as well as direct meetings with physicians around the world. The foundation serves as a resource for patients and their families through its website, other forms of social media, and family conferences.
Interesting data from their 2020 990 filing
The filing clearly states the mission of the non-profit as “The mission of the ryr-1 foundation is to support research leading to an effective treatment or a cure for ryr-1 related diseases through supporting research, physician education, and patient & family support and advocacy.”.
When outlining its functions, they were explained as: “The mission of the ryr-1 foundation is to support research leading to an effective treatment or a cure for ryr-1 related diseases through supporting research, physician education, and patient & family support and advocacy.”.
- In compliance with legal regulations, the non-profit has reported their state of operation as PA.
- The filing records the non-profit's address for 2020 as PO BOX 13312, PITTSBURGH, PA, 15243.
- As of 2020, the non-profit's form reports a total of 2 employees.
- Is not a private foundation.
- Expenses are between $250,000 and $500,000.
- Revenue is between $500,000 and $1,000,000+.
- Revenue less expenses is $395,210.
- The organization has 12 independent voting members.
- The organization was formed in 2014.
- The organization pays $61,433 in salary, compensation, and benefits to its employees.
- The organization pays $22,834 in fundraising expenses.