The XXYY Project is now a project of AXYS at genetic.org but we continue to provide direct services for XXYY families and we continue to operate our own activities, support, etc. We have two XXYY members representing us on the AXYS Board of Directors.
Gail Decker, XXYY Project Volunteer and AXYS Board Member
Gail Decker is retired and currently splits her time between several volunteer organizations. The Staten Island Developmental Disabilities Council, The Staten Island JCC and AXYS/XXYY Project. She is a co-chair for the Membership & Guidelines Committee for SIDDC and is an AXYS Board member as well as assisting with the management of the XXYY Project operations and the AXYS Fundraising Committee. She also serves as a committee member of the SIJCC for People With Disabilities Committee.
She has two sons. Brandon Romandetti (1992) is her XXYY guy and Christopher Romandetti Jr. (1990), who is married and lives in Jersey City, NJ. Her husband Bill Decker completes the family picture and they live in Staten Island, NY.
John Sloss, XXYY Project Co-communications Manager and AXYS Board Member
John lives in Appleton, Ontario, Canada. Appleton is a small village 20 minutes west of Ottawa, Canada’s capital. John is a grad in electro-mechanical engineering technology with specialty in robotics from Algonquin College. Working full time in the nuclear medicine/ radiopharmaceutical industry since 2003 in the instrumentation technology division at Nordion and BWXT ITG Canada.
John enjoys spending time outdoors with family skiing, golfing, cycling and fishing. Played competitive soccer for 25 years at the div 1 and college level. Coaching and volunteering are also activities John has been able to participate in within his local community.
Married to Wendy since 2000. They have one son Brodie (2007) who was diagnosed with XXYY in late 2014. Brodie attends Notre Dame Catholic High School in Carleton Place, Ontario.
Since 2016 John has been proud to assist the XXYY project as the Co-communications manager. He has been on the AXYS board since 2019.
Wendy Sloss – XXYY Project Family Support Manager / Co-communications Manager / Intake Coordinator
Wendy, her husband John, and son Brodie (2007) live in Appleton, Ontario, Canada. Brodie was diagnosed with XXYY in 2014, at the age of 7.
Wendy has been part of the XXYY Project volunteer team since 2016, and aims to provide relevant information to families and supporters of the XXYY Project. In the family support role, Wendy will seek to provide answers to questions, and direct families to resources/supports to best assist.
Wendy is a Senior Design Technologist with a consulting company in Ottawa, where she has worked since 2000.
When free time presents itself, Wendy enjoys spending time outdoors with her family, gardening and photography.
Rosemary Stankiewicz, XXYY Project Volunteer
Rosemary Stankiewicz lives in Peabody, Massachusetts (a suburb 16 miles north of Boston) with her husband, Kevin. They have 3 children, Rebecca (1984), Brad (1985) and Jason (1989). Jason is her XXYY guy. Jason was diagnosed when he was 14 years old. Shortly after Jason’s diagnosis, Rosemary found and became a member of the XXYY group. Rosemary is a Clinical Research Coordinator and has worked for The Veterans Administration, Boston University, and for the last 25 years, in Oncology at Massachusetts General Hospital. She enjoys digging into data and helped research a project for XXYY in 2023. Rosemary has attended many XXYY Symposiums and AXYS Conferences. She feels it is one of the best ways for her and Jason to meet other XXYY guys and their families and to learn all she can about XXYY.
Rosemary is very active in the substance abuse field. She is a facilitator for a group called “Learn to Cope” which has in person meetings and zoom meetings helping families deal with substance abuse.
Rosemary finds it very rewarding helping families navigate difficult, trying times whether it be in the XXYY field, substance abuse or oncology. Rosemary loves to travel and has been all over the world. She enjoys meeting people from other countries and cultures.
Dr. Nicole Tartaglia, Medical Director
The XXYY Project is proud to claim Dr. Nicole Tartaglia (AKA Dr. T) as our Medical Director. Dr. Tartaglia has helped pioneer research on 48 XXYY and currently runs the eXtraordinarY Kids Clinic in Denver, serving children with X & Y chromosome variations.
Renée Beauregard, an Original Founder, Retired
Renée began looking for other parents of boys with XXYY after her son was diagnosed in 1992. She set up the first website for XXYY, hoping that other families would find it. She managed to find three other families and together they began our listserv, called the XXYY Parent Network, in 1998. After six years of building the support group, parents decided it was time for us to become more formally organized. In 2004, Renée formed the organization with several board members. Renée served as the volunteer Director of the XXYY Project for several years.