The mission of the Prader-Willi Syndrome (PWS) Project for the State of New Mexico is to identify individuals with PWS or PWS-like conditions and to assist these individuals and their families in finding services that will promote their health and allow them to choose and achieve their life goals and fully experience community life.

Prader-Willi Syndrome
Prader-Willi Syndrome (PWS) is a genetic developmental disability first identified in 1956. Affecting between 1 in 12,000 to 15,000 live births, PWS if left untreated can result in morbid obesity and death. It is a multi-faceted disorder characterized by a non-functioning hypothalamus. This hypothalamic dysfunction along with problems in other regions of the brain are at the heart of this disability.

Characteristics
Hypotonia: low muscle tone affecting all muscles in the body

Hyperphagia: an insatiable appetite leading to uncontrolled eating and active efforts to seek out food

Hypogonadism: small genitalia and a lack of sexual maturity

Hypomentia: learning disabilities and/or mental retardation

Emotions: are not modulated that can lead to emotional outbursts, temper tantrums and mood swings

Behavior: can be inflexible leading to stubbornness, hoarding, self-trauma and aggression

Physical characteristics: short stature, almond-shaped eyes, proportionately small hands and feet, different facial proportions and a pear-shaped body type

Services
The PWS Project, funded by the New Mexico Department of Health, was begun in 1990 due to efforts of families and individuals with PWS lobbying the State Legislature. The Project is the only program of its kind in the country. Operating statewide, the Project offers:

Identification, Referral and Diagnosis: If PWS is suspected, the Project will direct families to a geneticist who can who can complete diagnostic testing

Case Management: The Project provides assistance in locating, developing and coordinating individualized resources and services in the person’s home community and in negotiating the various DD systems

Nutrition Consultation: An individualized Medical Nutrition Therapy program for each person including consultation and training on implementation of diets

Development of Residential Services: The Project assists individuals and families develop living arrangements designed to meet the needs and wishes of someone with PWS

Behavioral Supports: The Project provides behavioral training, consultation and support to individuals, their families and service providers

Family Supports: Each family develops an individualized service plan. In addition families are provided essential information regarding PWS, available support services including benefits and guardianship

Emergency Respite: The Project provides families with funds for emergency respite services requiring prior approval

Training and Education: The Project offers training and education to providers, families and persons with PWS

For information or to make a referral,
please contact the PWS Project at:
Prader-Willi Syndrome Project
11300 Lomas, NE
Albuquerque, NM 87112

Statewide
1-800-794-7970

In Albuquerque
332-6868