ARCA’s Prader-Willi Syndrome Project for New Mexico

ARCA provides services to individuals with Prader-Willi Syndrome (PWS) and their families on a statewide basis through The Prader-Willi Syndrome Project for New Mexico – the first full time, professional project of its kind in the country. The Project was established in 1991 with funding from the NM Department of Health.

OUR MISSION

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

CALL: 505.550.1550

(toll-free: 1-833-316-0011)

or click on the CONTACT tab below to send us a message.

What is Prader-Willi Syndrome (PWS)?

PWS is a life-threatening genetic developmental disability that effects the functioning of the hypothalamus. Among the results of this disability are muscle weakness, a lack of the satiety signal to stop eating, learning issues, behavior problems and, if not managed correctly, morbid obesity from which people with PWS can and do die.
ARCA’s PWS Project provides specialized consultation and services to 60+ individuals and their families. Services include identification and referral, individualized Medical Nutrition Therapy, training and consultation on the medical, behavioral and emotional supports necessary for people with PWS. The Project attempts to develop programs in local communities around the state for each individual. These include programs for home, school and place of employment. The Project works to ensure all people in the lives of the individual are educated about PWS and its management.

Prader-Willi Syndrome

Prader-Willi syndrome is a complex genetic condition. In infancy, symptoms include weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development. Affected individuals develop an insatiable appetite, leading to chronic overeating (hyperphagia) and obesity.

Characteristics

• Short stature

• Almond-shaped eyes

• Thin, tented upper lip

• Pear-shaped body type

• Low pigmentation

• Different facial proportions

• Small hands/feet with a straight ulnar border on the side of the hand

• The Hypothalamic and other regions of the brain are not functioning resulting in:

Hypotonia:  Low muscle tone affecting all muscles in the body.

Hyperphagia:  Insatiable appetite leading to uncontrolled eating and searching for food.

Hypogonadism:  Small genitalia and lack of sexual maturity.

Hypomentia:  Learning disabilities and/or mental retardation.

• Emotions that are unmodulated and can lead to outbursts, temper tantrums and mood swings.

• Behavior that is inflexible and can lead to stubbornness, hoarding, self-trauma and aggression.

• An experience of pain and illness that is different from people who do not have PWS.

We are dedicated to promoting an increased awareness and understanding of PWS. We provide written information, training, conferences and seminars to individuals and groups interested in learning more about PWS. Our Services Include:


• Identification and Diagnosis

If PWS is suspected, we will direct families to a geneticist who can complete diagnostic testing.

• Case Consultations

Our program provides assistance in locating, developing and coordinating individualized resources and services for the management of PWS in a person’s home community.

• Training and Education

We offer training and education to providers who serve individuals with PWS. Our program provides behavioral training and consultation to individuals, their families and other service providers.

• Nutrition Consultation

A Nutritionist develops an individualized Medical Nutrition Therapy program for each person served. We also provide consultation to other service providers and other Nutritionists/RD’s as individuals require specialized nutrition supports.

• Family Supports

We provide families with essential information regarding PWS and available services, including residential opportunities, benefits and guardianships. Additionally, we collaborate with families in the development of individualized service plans.

• Emergency Respite

Our program provides families with funds for respite services on an emergency basis. Prior approval from the PWS Project Director is required for this service.

Helpful Resources:


Building a Community of Supports:

CLICK HERE to access our PWS conference archive, including extensive resources to download and video of the 2017 conference.

There are no upcoming events at this time.

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ARCHIVE

Click on the links below to read through our newsletters:

October 2020

September 2020

August 2020

July 2020

PWS Nutrition and Immunity

May 2020

April 2020

March 2020

February 2020

Our training, available to family and community members, is just one of the ways we support individuals with PWS. To access the trainings, simply click on the links below. If you are working with an adult with PWS, click on the Adult link. If a child, click on the Child link.

Adult: https://arcaopeningdoors.org/training/iSpring/PWSAdult/

Child: https://arcaopeningdoors.org/training/iSpring/PWS/

If you would like more information, please contact the New Mexico Prader-Willi Syndrome Project at (505) 550-1550, 1(844) 302-6868 (toll-free) or email.

For more information, or to refer individuals for services, please contact us.

Call (505) 550-1550 or Toll-Free: 1(844) 302-6868

Giovanna Bourguet, New Mexico Prader-Willi Syndrome Project Case Coordinator
Office: 505.332.6828  |  Cell: 505.550.1550  |  email
Loretta Sesbeau, PWS Nutritionist
Office: 505.243.3850   |   email
Michelle Harmon, Project Director
Office: 505.332.6843 |  email