About PWHC
Prader-Willi Homes of California (PWHC) is a nonprofit dedicated to creating a state-of-the-art residential centers in the San Francisco Bay Area for people with Prader-Willi syndrome, who have been dealt such a difficult hand and deserve the special home and carefully trained staff needed to give them a full life.
About Prader-Willi Syndrome
Prader-Willi Syndrome (PWS) is a complex, rare, and random genetic disorder that affects one in twelve to fifteen thousand people. First discovered in 1956 by Swiss researchers Andrea Prader, Heinrich Willi, Alexis Labhart, Andrew Ziegler and Guido Fanconi, PWS is the leading genetic cause of morbid obesity. There is no known cause or cure.
Like many syndromes, Prader-Willi presents a litany of difficult problems that may happen to varying degrees: failure-to-thrive at birth, obsessive-compulsive behavior, mild to severe mental retardation, scoliosis, strabismus, skin-picking, learning disorders, and such; but the defining characteristics of PWS are hypotonia, lifelong low muscle tone, and hyperphagia, the inability to feel sated when eating, leading to a never ending feeling of great hunger that drives those with PWS to constantly seek food, often in a most disastrous way. The results can be devastating: all the problems associated with obesity such as diabetes, heart problems, sleep apnea, plus some more extreme issues such as stealing food, eating garbage, stomach necrosis and rupture, sometimes leading to single incident fatalities.
Because it is part of their genetic make-up, people with PWS will never be able to control their relentless drive to eat, and, in an ironic twist of fate, people with PWS need substantially less food (about 40% of a normal diet) due to slow metabolism – constant hunger on a starvation diet! Many families are unable to meet the sharp need for food control, behavioral supports, and predictable routine and structure. Caregiving requires constant vigilance, 24/7 supervision, and great expense.
This is why PWHC strives to create a state-of-the-art residential centers for individuals with Prader-Willi Syndrome.
For more information:
For California residents the Prader-Willi California Foundation is a wonderful resource, and you can find support groups for different areas on their website at http://www.pwcf.org/pages/sg.htm
The national Prader-Willi Syndrome Association also is an excellent resource, and they have information on support groups in other states at http://www.pwsausa.org/support/index.htm
“…creating a slice of heaven on earth.”
— Lesley de Lone, founder
Board of Directors
Austin and Lesley de Lone, Founders
Austin and Lesley have have two beautiful children: Caroline, a very talented singer and songwriter, and Richard who is 26 and was born with Prader-Willi Syndrome (PWS).
Lesley was born and raised in Radlett, England, just north of London. She is a highly trained florist, having done flowers for the Savoy Hotel Group, The Duchess of Kent, Houses of Parliament, and 10 Downing Street. For the past 15 years Lesley has been Personal Chef to best selling author Catherine Coulter.
Austin was born and raised outside of Philadelphia, PA, and dropped out of Harvard University in 1969 to pursue a career in music. His first band, Eggs Over Easy, is credited with starting the British rock movement called Pub Rock. Austin has performed with Elvis Costello, Boz Scaggs, Nick Lowe, Bonnie Raitt, The Fabulous Thunderbirds, Loudoun Wainwright, Carla Thomas, Irma Thomas, Clarence Clemons, Howard Tate, Commander Cody, and others.
Being older parents, the de Lones realized soon after Richard’s traumatic birth that they needed to find a way to help him and others with PWS who no longer can live at home. Thus was born The Richard de Lone Special Housing Project, later renamed Prader-Willi Homes of California (PWHC), with the dream of creating specialized housing and services for people with PWS.
Jonah Steinhart, President
Jonah Steinhart is a Bay Area native and the father of three young children, including Annika, a 17-year-old girl with Prader-Willi Syndrome (PWS).
In 2016, Jonah and his wife Heidi took the advice of multiple PWS experts and made the heartbreaking decision to place Annika at Latham Centers in Brewster, MA, the only residential school in the country for individuals with PWS.
The Steinharts are committed to Prader-Willi Homes of California so that one day families of individuals with PWS are not forced to send their loved ones out of California to get the care they need.
Jonah is a teacher, writer, and producer. He co-founded and sold two Internet companies from 1998 to 2000 and has a bachelor’s in history from Stanford University and a master’s in education from the University of San Francisco.
Stephen Meeker, Treasurer
A Graduate of Bucknell University, Steve went on to receive the Bronze Star and Army Commendation Medal while serving as an Officer in Vietnam.
After his military service, he worked with three of the largest national insurance companies in New York and San Francisco, in both sales and management. After a 45+ year career in the insurance industry, Steve retired in 2021.
Steve has served both as treasurer and board member on a number of community organizations including The Olympic Club, Cathedral School for Boys, St. Luke’s Episcopal Church and Lifehouse, a Marin County-based organization dedicated to serving people with developmental disabilities. He has also been a member of the Insurance Faculty at Golden Gate University.
Steve’s other interests include his family, golf and cooking. Steve was appointed Tournament Chairman for the 2012 US Open Golf Tournament held at the Olympic Club in San Francisco.
Brent Goldman, Secretary
Brent is a Marin native who recently found his way back home after 25 years in New York and Chicago. He and his wife Lauren live in Kentfield with their three young children. Their oldest, 9-year-old Brady, has a rare genetic disorder called PTEN Hamartoma syndrome. Brady has autism, intellectual disability, and other medical challenges stemming from the PTEN mutation. Brent’s nine-year journey with Brady has compelled him to delve deeper into the challenges that strain special needs families. For many, long-term care/housing is at the top of the list.
Brent recently retired from finance after trading equity and index derivatives for 22 years, and is contemplating the next chapter of his career. In the meantime, he is focused on non-profit endeavors, biking, hiking, skiing, tennis, and gardening.
Brent attended Redwood High School, and graduated from Cornell University with a BA in Government.
Steve Senk, Director
Steve Senk began his career in the music business over 20 years ago as National Sales Manager for Sony Signatures. After managing Sony’s sponsorship program for the 1998 World Cup in Paris, Steve secured North American Licensing rights from Apple for The Beatles. Steve grew this program for Sony, Signatures Network, and ultimately Live Nation in his position as Vice President of Licensing until 2012.
During his career Steve managed the licensing and merchandising programs for many rock luminaries including The Beatles, John Lennon, Barbra Streisand, The Who, The Doors, Kiss and rock-related properties Woodstock and Mouse Kelley.
Prior to entering the music business Steve trained at the Culinary Institute of America and enjoyed a career in the hospitality industry.
Since 2014 Steve has been a partner at Second Octave based in Rohnert Park and produces concerts in Sonoma.
Sally George, Director
Our family came into the PWS community through our son Luke. My husband Mark and I met at dog shows where we were both professional handlers. We joined forces, married in 1987, and forged a successful career as nationally-recognized handlers. We purchased a kennel in Sonoma in 1989 and settled in. Babies were more elusive than show ring success, and in 1996 our first son Edward was born with health issues requiring extensive surgeries. This put our dog show travels on hiatus, but we worked through it.
When Edward was three we thought the best way to give him a more normal life was to bring a second child into our family. In 2000 Luke arrived with low muscle tone and no diagnosis. It took until he was 9 months old to diagnose him with PWS in a unique chromosomal form, mosaic UPD, with three different cell lines. We were told they had no idea how he would develop, we would just have to see who he became, and so we have.
Luke is clever, especially when it comes to acquiring food. He is gregarious and desperately wants to be free to develop his own social life. The constant need for food supervision has frustrated him to a point of depression. He knows that living at home with his mom is not what he wants for his life, but finding an appropriate place for him has proven virtually impossible. As Luke grew his needs required mom and dad more in attendance, so we retired from the dog shows and instead have run a dog kennel and grooming business in Sonoma. Mark passed away in May 2019 and his dad’s passing brings to the forefront the need to find Luke his forever home.
ADVISORY BOARD
Dr. Suzanne Cassidy
World-renowned Clinician, Former President, International PWS Organization
Elvis Costello (pictured with Richie)
Legendary Rock & Roll Hall of Fame Artist
Maddy de Lone
Former Executive Director, The Innocence Project
Kevin and Michelle Donaldson
PWS Parents
Bruce Dorfman
Real Estate Developer
BJ Goff
PWS Residential Specialist
Lisa Graziano
PWS Parent, Former Executive Director Prader-Willi California Foundation
Dawn Holliday
Former Executive Producer, Hardly Strictly Bluegrass Festival; Former General Manager Slims and Great American Music Hall