While their brothers or sisters are busy in YIP or YAP, this program was developed to enhance their individuality and reinforce their sense of importance. For most kiddos whose brother or sister has PWS, their home life revolves around the complexities of their sibling’s environmental and care needs. This program allows them to have fun, meet and develop relationships with others who are in similar situations, explore new possibilities and share experiences with one another.
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Sibling Program Staff
Rockie Penta – Sibling Program Director
Rockie Penta lives in Arizona and her 25-year-old, older brother Victor is diagnosed with Prader-Willi syndrome. Rockie has always had a special bond with Victor, always challenging him to try things outside of his comfort zone. She worked with him on his homework nearly every night, while going to swimming with him all season long until he was confident enough to join a team. It was no surprise that when she moved out on her own, that she made sure Victor had his own room at her house. She has and will always be his biggest cheerleader.
It was also no surprise that when Rockie graduated from high school she immediately began working with special needs adolescents, several who had been diagnosed with Prader-Willi syndrome. Having a passion for this work, she obtained her Certified Nursing Assistant certification, as well as other state Department of Disabilities certifications and since the age of eighteen, she has worked for a business where she serves the disabled population in attendant care, habilitation and respite services. Rockie plans to further her career in Special Education.
Rockie has volunteered for a number of years for Camp Civitan, a special needs camp, with Prader-Willi Syndrome Arizona Association, as well as PWSA (USA) where she most recently was the Assistant Director of the 2017 National Convention Sibling Program.
Rockie is married to Jonathan and they have a one-year old son, Thomas along with their dog (Tank) and cat (Gracey). Rockie looks forward to sharing her experiences by supporting the younger siblings through this two fun packed days of activities and relationship building with others who truly understand how wonderful and challenging somedays can be.
Tammie Penta – Sibling Program Assistant Director
Tammie Penta retired from Tucson Police Department in Arizona with over twenty-seven years’ experience. She was fortunate enough to supervise several units including the vulnerable adult task force and child abuse unit, which allowed her to learn the legalities about our most vulnerable population, that included her son and those affected with Prader-Willi syndrome. Tammie was also one of the instructors for the Crisis Intervention Training for law enforcement in Southern Arizona. This training gave officers the tools needed to interact with our developmentally disabled population while introducing law enforcement to Prader-Willi syndrome.
However, it is her love and passion for her son Victor who is twenty-five, and the PWS community that have been her strength throughout the years. Victor was diagnosed at two years old after having numerous medical complications from being born two months early and the typical low tone that comes with the syndrome. Almost immediately after the diagnosis, Victor had several episodes of heart failure. It was at this time that the caring parents and professionals involved with PWSA (USA) entered her life and quite frankly, never left. Likewise, she began her journey learning about the syndrome and getting involved. She became a state board member in Arizona, two months after being given his diagnosis and to this day, remains on that board. Tammie the current Vice Chair for the PWSA (USA) Board of Directors and in addition took on the role of the family support committee chairperson, so that she could continue to give back to what so many people gave to her for so many years. Luckily, she recently retired, so her extra time is spent with her son and supporting families around the United States.
Tammie is married to Phil and they have two other children. Nick, who graduated from Arizona State University with a Health Sciences Degree and Rockie Penta who is pursuing her degree in special education.
Molly (Kane) Bruckner
Molly Bruckner, 33, is the proud younger sister of Kate Kane, 37, who is diagnosed with Prader-Willi syndrome. Molly lives in Boston with her baby boy and husband where she and Kate, who lives in Wisconsin, compete over snow accumulation totals each winter. She and Kate grew up together in Maryland and reunite there with the rest of their family at least every other month. Growing up with Kate, Molly became passionate about special education. Since graduating with a Special Education degree, she has gotten her Masters in Special Education and has taught students with special needs for nine years. Now Molly stays at home with their 11-month-old, doing her best to educate him!
Cindi Machadowas born and raised in Tucson, Arizona. She has one brother and two sisters that have given her the pleasure to call herself an aunt to two nieces and two nephews. Cindi has been married for over six years to her husband Rene and have a handsome four-year-old son named Noah. Cindy has been working in the dental field for over seven years and is currently employed at a pediatric dental office that specializes in care for children with special needs. Her hobbies include traveling with my family, listening to music and watching movies.
Jonny lives in Arizona and has a brother-in-law Victor, who is diagnosed with PWS. Jonny is extremely close with and involved in his daily care and overall support. He and his wife Rockie have both volunteered at Arizona events and for the 2017 National Convention Sibling Program. Jonny works full time, but his hobbies include skateboarding and playing video games. He and Rockie have a one-year old son Thomas, along with their dog Tank and cat Gracey. Jonny looks forward to spending time and having an amazing two days with all the participants in October.
Jonah Rupnow volunteered in the YAP program at the 2017 convention and has volunteered regularly at various PWSA-WI and PWHO events over the years. Jonah has grown up attending these events since he was 2 years old with his mom, Marguerite.
Jonah graduated from Lakeside Lutheran High School in May of 2019 and plans to enter the workforce as he determines school options.
“I am excited to meet and spend time with the siblings and have a good time with them. I can’t wait to show my God given talents and give these kids a good time.”
Ashley Smith is the older sister of 25-year-old, Anna Loker, who has Prader-Willi syndrome. She was 11 years old, when PWS was brought into her life and has been forever changed by it. Ashley has a unique view of growing up with a very special sibling and all the ways it has affected her personally as well as the family as a whole. Because of the way Anna and the PWS community has shaped her life, she spent fifteen years as a Special Education Paraprofessional and is now currently obtaining her degree in Echo Sonography.