State-of-the-art residential living for people with Prader-Willi syndrome
Our first home is open!
“Moving to de Lone House means more independence, freedom, and also new responsibilities — it’s about being in a place with new friends who are all learning how to live on our own. It also means new opportunities, like going hiking, to the library, or to play mini-golf with housemates and friends, or just outside to play basketball or hang out in the backyard.”
-Oscar, de Lone House resident
Our Vision:
To ensure people with Prader-Willi syndrome have the support of family, friends and community to experience the best quality of life possible.
Our Mission:
To establish and maintain homes that serve people who have Prader-Willi syndrome and other individuals with developmental disabilities who have similar service needs, to provide support services to these individuals and their families, and to educate the public about Prader-Willi syndrome.
Housing
Individuals with PWS suffer cognitive and physical challenges that are unique, complex, and life-threatening. As a result, people with PWS are unable to live independently, and all require 24-hour residential care in specially designed homes with a highly trained staff.
PWHC currently is raising funds to buy, refurbish, and staff our SECOND home in the San Francisco Bay Area.
Support
A PWS home is only as good as the people who staff and support that home. While providing a residence to individuals with PWS is a primary goal, PWHC also acts as a nexus for residential PWS information and training through our expertise and contacts with some of the foremost experts on PWS in the world, including Dr. Suzanne Cassidy, BJ Goff, and Lisa Graziano.
PWHC constantly is recruiting PWS experts from around the globe to join our team of residential advisers and trainers.
Families
We partner with PWS families to help explore housing options for their loved ones. These collaborations include helping families navigate state and local systems to find residences and staff that best support individuals with PWS.
PWHC currently has a waitlist of families eager to place their loved ones with PWS at our second home. We welcome additional families to join us as we establish additional homes.
Stories
Meet some of the people who inspire our work.
Richard de Lone
When Richie was born in January of 1998 he was 6 weeks premature. All during the pregnancy he barely moved in the womb, and at first even the OBGYN didn’t think that his Mom was pregnant.
Julia Lindstrom
Julia was born in 1985 by a traumatic Caesarian delivery. She was a healthy size of 8lbs 1oz, and to me she was beautiful. After her birth she exhibited weak sucking muscles, and had trouble nursing or taking a bottle, but she was able to go home after spending just a few days under observation.
Juliette Anderson
Our second daughter, Juliette Rita, was born in October 2001. It was a very difficult birth ending in Caesarean section. Her Apgar was 6. She was like a rag doll. Floppy baby syndrome it was called. The doctors told us they were at a complete loss as to why she presented this way. Will she be able to walk? I asked. We do not know they said. I broke down. The first of many times I’ve done so.
Annika Steinhart
After the intercom alert, the squeak of shoes, and the man’s anguished screams, the psych ward fell silent. I lay in a chair-bed combo in a small exam room, my eyes fixed on the door. The handle had no lock, and the slit of a window afforded a clear sightline out of the room - and into it.
Latest News
The latest updates from PWHC.
8/25/24 Year One at the de Lone House:
An update on the first year of our first home! Click here