https://www.praderwillihomes.org/about daily 0.75 2025-10-21 https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/d8f0254b-4d0c-4581-93dd-efb377579075/Austin+and+Lesley.jpeg About - Austin and Lesley de Lone, Founders Austin and Lesley founded Prader-Willi Homes of California (PWHC) with their two beautiful children in mind: Caroline, a very talented singer and songwriter, and Richard, who was born with Prader-Willi Syndrome (PWS). Following Austin’s passing in January 2025, Lesley and the rest of the PWHC board continue to pursue Austin and Lesley’s vision of providing homes and support for individuals with PWS and their families. 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 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, with the dream of creating specialized housing and services for people with PWS. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/59a9533c-b12b-4199-a719-2e80f6a1667f/Goldman.jpg About - 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. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1592950006907-5EROP1HRGTCBSS687Y5R/Jonah+Steinhart+2.JPG About - Jonah Steinhart, President Jonah Steinhart is a Bay Area native and the father of three children, including Annika, who has 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. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/f987e1f2-7bf9-415d-ab7a-ecf92d76c616/Mary+Claire+Hill.jpeg About - Mary Claire Hill, Executive Director Mary graduated from Dartmouth College with degrees in economics and French and worked as an actuarial consultant before moving to California to pursue a master’s in city planning. She has three adult children and lives in Berkeley with her husband, Paul. Since her son was born with Prader-Willi syndrome 24 years ago, she’s focused on the medical, behavioral, and educational aspects of PWS. She’s trained teachers and aides, given talks on food security, behavior management, and navigating the educational system, and has served as a support and source of information for families and professionals. Mary has also served on several nonprofit boards including Berkwood Hedge School, Prader-Willi California Foundation, and a Marin-based writing group where she contributed to and co-edited two anthologies of essays. Mary currently works as a data analyst with Teams@Haas at UC Berkeley, Haas School of Business. Mary’s passion for expanding safe housing, social, and recreational opportunities for adults with Prader-Willi syndrome so they can live enriching, engaging, and productive lives drew her to Prader-Willi Homes of California. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1622165326370-2CMD2ZFGFJWKBBQ4Q1F0/Steve+Meeker+%281%29.jpg About - 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. Steve and his wife Kathleen have two sons and a daughter. Their daughter Anne has PWS and resides at the de Lone house in Novato. Steve’s other interests include golf, cooking and traveling. Steve was appointed Tournament Chairman for the 2012 US Open Golf Tournament held at the Olympic Club in San Francisco. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/5908b415-6cd1-4815-9081-8197a32533a0/Molly+and+Brooke.jpg About - Molly Fuller, Director Molly is the sister and guardian of Brooke (left), who lives with Prader-Willi Syndrome (PWS). With a lifetime of experience working within the PWS community, she has a deep understanding of the unique challenges individuals and families face. Molly is passionate about expanding supported living options, recognizing them as a pathway to independence for those with PWS. She is a former board member of the Prader-Willi California Foundation. Her experience in establishing the infrastructure necessary to create safe and supportive homes for individuals with PWS is an asset to our mission. Molly is from Grand Rapids, Michigan. She has a degree in cultural anthropology from the University of Michigan and was the co-founder of Hands On Gourmet, a popular events company based in San Francisco. She currently lives in Tahoma, CA. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1592950905190-ZD7E5AWBHVBDJ1XFJW4V/Senk+Photo.jpg About - 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. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1cfd1276-5451-417b-a934-9ec64bdf88f9/McCleery.jpg About - Matt McCleery, Director Matt McCleery, Director https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1602541818012-56XC0KSSK1UXRPI6Z5XO/Sally%2BGeorge.jpg About 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. https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1593015543508-JLRSUX4YLP1TF7UAM3R7/100_1359.JPG About 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 https://www.praderwillihomes.org/home daily 1.0 2025-05-10 https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/def2b31f-656d-4a84-a7c1-0462a6f835a4/Four+Residents+Vivid.jpg https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/9b8e36ba-ea82-474e-b43a-5241063bf942/Screenshot+%281%29.jpg Home https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1593023192071-27S0YTLK1B8VAYZ0FZQ6/IMG_0914.jpg Home https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/5940fae7-f332-4d25-93bd-0d94642cdf8a/IMG_5921.jpeg Home https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/a8928668-9498-4b24-a81c-80489ac1a90c/IMG_9003.jpg Home - 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. Continue reading… https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1593123741648-FUQM7DNY2S1YWGO9ULAR/IMG_3630.jpg Home - 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. Continue reading… https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/63b9b7b2-49fd-481e-b6f2-5eddb98369fb/IMG_9014.jpeg Home - 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. Continue reading… https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/15280dd0-7f78-45fa-b35d-d54a3f74a121/Julie_new_haircut_Jan_2007.jpg Home - 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. Continue Reading… https://www.praderwillihomes.org/get-involved daily 0.75 2020-06-29 https://www.praderwillihomes.org/julias-story daily 0.75 2020-06-24 https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1593024792516-WC0144G94XEN382VX0BZ/julia-01.jpg Julia's Story - Julia’s Story 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. At 5 months old it was apparent she was not reaching any milestones. She still had trouble holding her head up, and did not reach for toys. At 10 months we hired an occupational therapist to come to the house to see if we could help her reach her age appropriate milestones. Her pediatrician kept telling us she was fine up until her first birthday. He then gave us the information to call the Regional Center. We were assigned a social worker who assisted us in getting Julia into an infant program for the developmental disabled. At age 3 she began the Early Childhood Education program for developmental delayed. It was during this time we met a child who had Prader-Willi Syndrome and, since Julia was so obsessed with food or the lack of it, we had her tested. She was indeed diagnosed with Prader-Willi Syndrome. At last we could understand what was going on, and we began to get her the help she needed. She started 1st grade in our neighborhood school with a one-on-one aide. This worked out pretty well til the beginning of 5th grade, when the behaviors around food started to get out of control. At home she would have temper tantrums that lasted for two hour and, worst of all, she began picking on her brother, who is 5 years her junior. It reached the point where we were afraid she might seriously hurt him. After visits with several family counselors we were advised to find an out of home placement for Julia in order to save our family and our son. A place where she would have the proper structure and care to deal with her food seeking and to take care of her unique dietary needs. Julia moved into her first group home at age 11. It was fine for a while, but never great. The staff was constantly changing shifts, or leaving employment. Some of the staff were wonderful, others a nightmare. Many times I had to stop what I was doing and drive to her group home to pick her up and get her out of the house due to the staff not being properly trained and not being able to redirect Julia. It was so hard for her and for us. She couldn’t live with us, but at the same time it was hard having her live away from us. These group homes were not homes designed for kids with PWS, but they were within driving distance (about 45 minutes w/o traffic). And they always promised that they could take care of her. We brought Julia home on the weekends. We missed her during the week and also knew that the weekends were when the group home was pretty much sedentary – nxo activities for the clients. When she turned 18 we looked at a few homes designed for young adults with PWS. Some of them did not seem appropriate for Julia, and others were too far away. She moved back in with us for a year, and then lived in and out of group homes and residential psychiatric hospitals until recently. She is now 27 and lives in an apartment with a Supported Living Services caregiver and one on one care. This too has its ups and downs. Due to her food seeking she is not able to hold a job (food is everywhere!), and during the day, if she is not busy, food is on her mind constantly, leading to difficult behaviors. After learning of the Richard de Lone Center for Living I have high hopes that Julia might be able to live out the rest of her life in a place where she will be happy, where she will be loved for who she is, cared for properly, and be with her peers. She needs the consistent routine and structure that a Prader-Willi community such as the de Lones hope to build can provide. She needs to be kept busy with exercise, games, art projects, and outings. She needs to be surrounded by people who understand how hard it is too be hungry all the time, and who can love her for who she really is — a sweet, loving girl with a terrible condition that is beyond self control. https://www.praderwillihomes.org/richies-story daily 0.75 2020-07-08 https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1591047201060-FPOZJE34TJHOQ8WTAP49/richie-01.jpg Richie's Story - Richie’s Story Our beautiful son Richie was born six weeks early, and he was not breathing on his own. After two weeks in the neo-natal ICU, and several transfusions, his wonderful physician told us that Richiehad a rare and random genetic disorder called Prader-Willi syndrome. He wisely informed us that this was the hand we had been dealt, and that we should take him home and learn to love him. And so, after six weeks in the ICU, with wires still attached to him, in the middle of a miserable, howling winter, we finally brought Richie home. Our world changed forever. We learned about special needs, IEPs, regional centers, and the hardship of fighting the system, constantly being denied what Richie was entitled to, even by those who were supposedly helping him. But we also learned about support groups, the kindness of strangers, the strength of parents who keep on fighting, and, of course, unconditional love. More recently we learned that Richie is also autistic. Being older parents we worried about his future and who would take care of Richie after us. In 2008 we created the Richard de Lone Special Housing Project, recently renamed Prader-Willi Homes of California, and began raising funds to build our dream of a specialized home for individuals with Prader-Willi, with the help of our amazing friends from the church of rock and roll … Elvis Costello, Ry Cooder, Bonnie Raitt, Boz Scaggs, and so many more. The years have not been easy for Richie. He has been demitted from three group homes, the last of which, though specifically designated as a Prader-Willi Group Home, was the worst of all, a practically Dickensian home of ignorance and neglect. When they could not give him proper, best practice care, they gave him a 30-day notice instead! Luckily as a last ditch effort, desperate, distraught, and scared, we were able to find Lynn and Darla, a Supported Living Services agency that was able to provide Richie with soulful 24/7 care. But it came at considerable cost. We had to buy a condo and now have to pay for all his living expenses, at the same time that we lost most of his financial support from Social Security. But now he is happy and well cared for by his amazing staff. They understand Richie and love him for who he is. We never thought that Richie would end up costing us and the state so much money, but the truth is good care doesn’t come easy or cheap! That is why we are still pursuing our dream of creating state-of-the-art residences for people with PWS. For though Richie may not need help now, we know there are so many who do, and who need and deserve a great place to live – as we say, heaven on earth. -Austin de Lone https://www.praderwillihomes.org/annikas-story daily 0.75 2021-05-27 https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/1593121543846-UCZ8O3IR098W33ATI82J/IMG_3630.jpg Annika's Story - Annika’s Story 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. This was an adult crisis ward for all of Marin County, CA. They took everyone, from the suicidal to the schizophrenic, the homeowner to the homeless. It was a risky place to spend the night. Especially because beside me lay my 9-year-old daughter Annika. But I fought to stay that terrifying night. I had no choice. There was nowhere else for us to go, because Annika has Prader-Willi syndrome (PWS). My wife Heidi and I were desperate to force our insurance company to approve her for the Pittsburgh Children’s Institute’s PWS inpatient program. From there, we hoped the Children’s Institute would help us force our school district to become the first in California to place a student at Latham Centers, the only residential school in the country for kids with PWS. We could not take Annika home, since she had been attacking her younger siblings and running away. There was only one child pscyh ward in the San Francisco Bay Area that would take a child so young, and it had no beds available. Thus, the absurdity of the adult ward. What do you do when there seems to be no place in this world for your child? When you feel completely adrift, desperate for your child to have just one friend, just one employee at her school who understands PWS, just a modicum of a life? Some of us bury ourselves in crippling self-pity. Some of us, eventually, fight. And what a fight it is. Our risky plan worked; the insurance company approved Annika for Pittsburgh, which recommended Latham, which caused our school district to cave after a four-year fight. Annika finally had a home at Latham, and our family finally had peace. Ours is the fortunate family to have found specialized residential care for our loved one with PWS. Most families are not so lucky. And we will again be among them when Annika ages out of Latham Centers and into adult housing. We would love to be able to bring Annika home to California as an adult. But we can only do that if California catches up to states like Massachusetts and begins providing specialized housing for people like our daughter. PWHC may one day allow Annika a joyous return to California. Above all, it could prevent many, many other families from having to send their loved ones out of state just to get the residential care they need. -Jonah Steinhart https://www.praderwillihomes.org/julietttes-story daily 0.75 2022-06-09 https://images.squarespace-cdn.com/content/v1/5e960db28ef5ee5c10db0ae3/4c2630b8-346a-43e7-bcf5-abe3c7002e41/Julie_new_haircut_Jan_2007.jpg Juliette's Story - Juliette’s Story Our second daughter, Juliette Rita, was born in October 2001. It was a very difficult birth which had to end in C-section. Her Apgar was 6. She was like a rag doll. Floppy baby syndrome it was called we learned later. After a short time the doctors told us they were at a complete loss as to why she presented this way. So strange that the MDs had no knowledge of PWS. Feeding her was another struggle. She could not suckle at the breast or any nipple we had. I went to a pharmacy and purchased one of every baby nipple they sold. Only one was she able to get nourishment thru – called strangely the Nuk nipple. She finally began to thrive. We still had no diagnosis at this point. We had to fight very hard just to get a specialist to see her. In fact, the CEO of my company stepped in to introduce me to an MD he knew. Thru that contact we saw Dr Katzenberg at Valley Medical Center in San Jose. We brought her to see him several times as he ran test after test, all negative. After one negative result he said to us – “Well Juliette does not have Prader-Willi Syndrome. And that’s a good thing cause you do not want her to have that.” Great we thought. Dodged that bullet. A short time later he referred us to a geneticist. I spoke to him on the phone and he told us there is another test for PWS and he ran that one. He called and apologized but said this test was positive for PWS. We both broke down. I devoured everything on the internet about PWS and became quite saddened. Not a pretty picture at all. We saw a geneticist at Stanford who prescribed HGH injections. When Juliette turned 8 or so we had to get some kind of drug prescribed for her deteriorating behavior, eg attacking her mother and kicking her grandmother. We were prescribed Abilify and that helped. But her behavior continued to worsen. We saw a multitude of counselors and psychiatrists about it trying a multitude of her drugs. One psychiatrist recommended the Genesight Analgesic Combinatorial Pharmacogenic Test which purported to determine how Juliette’s body would react to dozens of medications. Using this, the psychiatrist prescribed one medication after another trying for improved results. Nothing worked well. And so it went. Juliette struggled in school and was a serious behavior problem for the staff. Then we learned of the Latham school on Cape Cod. Focused on the care and schooling of Prader-Willi children. 3000 miles away but if it could help Juliette 30,000 miles would not have been too many. We worked to get her into Latham. It took a lawyer to do it. We got Juliette off to Cape Cod in October of 2019. She was 18 years old at the time. But she was happy to go because all her school friends were leaving for college and we told her this was her college. Two years later and she is much happier now. Latham takes them on outings often. Once she told us they saw a white dolphin being rescued. Another time Latham took a group of the children to Gillette Stadium to see a traveling exhibit of lifesize dinosaurs. She was thrilled. Juliette’s life at Latham is finally beginning to blossom. After she ages out of Latham in 2 years she will need to go to a group home. She seems to accept this. But such homes are few and far between here in California. Having learned of the PWHC and the tireless work of the deLones and Steinharts and others we hope that PWGH will be Juliette’s new home. -George M. 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