Foundation For Prader Willi Research
Foundation For Prader Willi Research
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About this organization
Mission
To Eliminate The Challenges Of Prader Willi Syndrome Through The Advancement Of Research And Therapeutic Development.
About
SUPPORT RESEARCH DESIGNED TO ADVANCE THE UNDERSTANDING AND TREATMENT OF PRADER-WILLI SYNDROME.PRADER-WILLI SYNDROME (PWS) IS A RARE GENETIC DISORDER AFFECTING APPROXIMATELY 1 IN 15,000 BIRTHS. PWS IS A LIFE-THREATENING MEDICAL DISORDER CAUSED BY LOSS OF ACTIVE GENETIC MATERIAL ON CHROMOSOME 15. NEARLY EVERY SYSTEM IN THE BODY IS IMPACTED BY A PWS DIAGNOSIS. AMONG OTHER THINGS, PWS AFFECTS:- HORMONES - MUSCLE STRENGTH - APPETITE - BEHAVIOR - COGNITION AND LEARNING - TEMPERATURE REGULATION - PAIN TOLERANCE - SLEEP PATTERNSBEHAVIOR PROBLEMS ARE ALSO COMMON AND ARE WORSENED BY AN UNRELENTING, OVERRIDING PHYSIOLOGICAL DRIVE TO EAT. FOR SOMEONE WITH PWS, THE FEELING OF FULLNESS AFTER EATING IS ABSENT.CURRENTLY, THERE IS NO CURE FOR PRADER-WILLI SYNDROME. FOR MANY INDIVIDUALS AFFECTED BY THE DISORDER, THE ELIMINATION OF SOME OF THE MOST DIFFICULT ASPECTS OF THE SYNDROME, SUCH AS THE INSATIABLE APPETITE AND OBESITY, WOULD REPRESENT A SIGNIFICANT IMPROVEMENT IN QUALITY OF LIFE AND THE ABILITY TO LIVE INDEPENDENTLY.IN 2018 FPWR INVESTED $1.7M INTO PWS RESEARCH GRANTS AND DIRECTED PROJECTS. IN ADDITION TO GRANTS, WE CONTINUED INVESTMENTS INTO OUR DIRECTED RESEARCH PROGRAMS SUCH AS A PWS MINDFULNESS INTERVENTION, THE DEVELOPMENT OF NEW ANIMAL MODELS, THE PWS CLINICAL TRIALS CONSORTIUM AND THE PRE-CLINICAL ANIMAL NETWORK. MORE FPWR FUNDED RESEARCH WAS PUBLISHED IN 2018 THAN IN ANY YEAR PRIOR: 37 PUBLICATIONS WERE ADDED TO THE MEDICAL LITERATURE, FURTHER DEFINING PWS AND INCREASING OUR UNDERSTANDING OF THIS COMPLEX DISORDER.
Interesting data from their 2020 990 filing
The purpose of the non-profit is outlined in the filing as “The mission of foundation for prader-will research (fpwr) is to eliminate the challenges of prader willi syndrome through the advancement of research and therapeutic development.”.
When discussing its operations, they were defined as: “Supports research to advance the understanding and treatment of prader-willi syndrome”.
- The state where the non-profit operates has been legally reported as NY.
- The filing indicates that the non-profit's address in 2020 is located at 340 S LEMON AVE NO 3620, WALNUT, CA, 917892706.
- The non-profit has reported 11 employees on their form as of 2020.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $558,704.
- The organization has 12 independent voting members.
- The organization was formed in 2001.
- The organization pays $1,097,677 in salary, compensation, and benefits to its employees.
- The organization pays $317,857 in fundraising expenses.
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