Leaders of the XXYY Project

/Leaders of the XXYY Project
Leaders of the XXYY Project2018-09-18T14:45:40+00:00

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 AXYS’ Board of Directors.

Larry Rakowski, XXYY General Operations and AXYS Board of Directors

Larry Rakowski is employed part-time as a freelance writer. Full-time, he is a stay-at-home-dad (his wife Kelly travels extensively as President for AMN Healthcare, Inc.). Previously, Larry was a senior healthcare executive with 15 years experience in managed care, hospital, and accreditation organizations. His areas of expertise include merger and acquisition implementation, organizational redesign, quality management, and product line development.

Larry partners with Gail Decker on the management of general XXYY Project operations.  In addition, he serves as Vice Chair of the AXYS Board of Directors.  Additionally, he chairs the AXYS XXYY Condition Specific Committee, and staffs the AXYS Research and Committee.

Larry holds a Master of Health Services Administration from the University of Michigan, as well as a Bachelor of Science degree in Biology (Anatomy and Physiology) from Syracuse University (N.Y.).

Born and bred in New Jersey, he has called Wisconsin home for the last 12 years.

In addition to their XXYY son Jason, a high school senior, Larry and Kelly have a daughter, Alexis, who attends the University of Michigan.

Gail Decker, XXYY Project Volunteer and AXYS Board Member

Gail Decker 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 Family Supports and Services Committee for SIDDC, AXYS Board member (also partners with Larry Rakowski on 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 is her XXYY guy and Christopher Romandetti Jr., who was recently married and lives in Jersey City, NJ. Her husband Bill Decker completes the family picture and we live in Staten Island, NY.

Carol Vigo, Volunteer, Australia coordinator

Carol Vigo is a Bookkeeper and currently splits her time between 3 part time bookkeeping jobs and is also involved with her kids school P&C as a volunteer.

She is married to Daniel and they have two children. James is her XXYY guy and she has a daughter Sofia. They live in Smithfield NSW which is about 30kms from the city of Sydney in Australia.

Her son was diagnosed with XXYY Syndrome when he was 3 years old in 2008.

Her hobbies are reading, picnics, going to the beach and spending time with family and friends. She speaks both English and Spanish.

Carol is dedicated and determined to find as many Aussie XXYY families as possible.

Laurie Milton, Moderator of XXYY Parent network Listserver

Laurie Milton, the current Moderator of XXYYParentnetwork Listserv, has been involved with the XXYY Project since its inception. Her son, Kent – XXYY age 29, was diagnosed in 1993. She became involved with KS&A shortly after his diagnosis and served on its board for several years, along with being the Moderator of the KS&A listserv.

Laurie and her husband, Mark resides in Roseville, CA.  In addition to their son, Kent, they also have 2 other sons, Brett, 32 and Richard, 23. They are also grandparents to 3 adorable kids. Laurie is employed as an Administrative Assistant in Educational Services for the Roseville City School District. Laurie and Mark enjoy spending time outdoors, hiking and snowshoeing.

Dr. Nicole Tartaglia, Medical Director

The XXYY Project is proud to claim Dr. Nicole Tartaglia (AKA Dr. T) as our Medical Director. Dr. Taraglia has helped pioneer research on 48 XXYY and currently runs the eXtraordinarY Clinic in Denver, serving children with X and Y chromosomes.

John Sloss, XXYY Project Co-communications manager

John lives in Appleton, Ontario, Canada. Appleton is a small village 20 minutes west of 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 for the last 15 years in the Instrumentation technology division at Nordion.

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 for 17 years they have one son Brodie who is 9 and was diagnosed with XXYY in late 2014. Brodie is heading into Grade 5 at Holy Name of Mary Elementary school in Almonte.

Since 2016 John has been proud to assist the XXYY project as the Co-communications manager.

Wendy Sloss, XXYY Project Co-Communication Manager

Wendy Sloss is a Senior Design Technologist with a consulting company in Ottawa, where she has worked since 2000.
She was born in Canada & currently lives in Appleton, Ontario, Canada with her husband John & son Brodie.
Brodie is non-mosaic XXYY, and was diagnosed in 2016, at the age of 8.

When free time presents itself, Wendy enjoys spending time outdoors with her family, gardening & photography.
Wendy has been part of the XXYY Project volunteer team since 2016, and aims to provide relevant information to families & supporters of the XXYY Project.

Lita Stephenson, XXYY Project Family Support Manager

Lita Stephenson is employed part time as a pediatric sedation nurse at Children’s Healthcare of Atlanta. She is a part of the sedation services team which provides procedural sedation for children of all ages. Some procedures include MRI, CT, Interventional radiology procedures, and bloodwork for autistic children.

Lita’s role as the XXYY Family Support Manager includes receiving incoming emails from XXYY families or individuals seeking support and information. She welcomes them and invites them to join the XXYY listserv and/or Private Facebook page where they can speak with other XXYY families for support. She provides them with XXYY research papers to review, answers questions, and helps them reach the most appropriate support system based on their diagnosis and physical home address.

Lita has a Bachelor of Science in Nursing and a Bachelor of Science in Healthcare Administration from the University of Central Florida. She has been a registered nurse for 19 years.

Lita has been married for 18 years to Brian Stephenson and they have 3 sons: Jack- 15 yrs old, Owen- 13 yrs old, and Nathan- 7 yrs old. Her youngest son, Nathan, has 48XXYY Syndrome. She has 3 sons in 3 different schools this school year!

Lita enjoys running outdoors and her gym time. She enjoys hiking to waterfalls and boating on local lakes with her family.

Kerstin Boettner, Volunteer – Europe Coordinator

Hi, my name is Kerstin and my husband Joerg and I are parents to three wonderful boys, Jan, 23, xy, Nico, 20, xxyy and Milan, 17, xy. We are living in a nice village close to Hamburg, Germany. I am working as a nurse, currently in homecare and in consulting.
I have been involved with the XXYY-Project since 2007. In 2010 Nico and I attended the 1. European XXYY Symposium in Copenhagen, Denmark and in 2012 the XXYY- symposium in Denver.

I started the German support-group in 2008; since 2014 we are having annual gatherings. Our group is open to other European XXYY families as well and affiliated to the German Klinefelter Syndrome organization (DKSV).

We are also connected to the very dedicated XXYY-group in the UK, to Orphanet and to EURORDIS-Rare Diseases Europe, which is a unique, non-profit alliance of over 700 rare disease patient organizations from more than 60 countries.

Besides being with my family and friends, I enjoy reading, dancing, singing, running, Nordic walking, yoga, music and travelling. Furthermore, our entire family is very involved with CISV, a global organization dedicated to educating and inspiring for peace through building inter-cultural friendship, cooperation and understanding.

Tracey Braun, XXYY Project Volunteer

Tracey Braun and her family live in Kings Park, New York (about 40 miles outside of NY City on Long Island).  She is a former athletic trainer and now teachers Sports, Exercise and Health Science at Northport High School.  Tracey is married to Francis (Fran) and they have three children.  Dylan (13) is her XXYY guy and has a daughter Mckaela (18) and a son Francis (16).  Tracey and Fran have been involved with the XXYY Project since Dylan was diagnosed at 1 year of age.  Tracey and her family have been to several XXYY conferences and she has always wanted to do whatever possible to help spread awareness.

Tracey enjoys watching her children play sports, going to the beach and simply enjoying time with friends and family.  Now that her children are older, Tracey is hoping to dedicate more of her time to the XXYY Project and the families that are a part of this wonderful group.

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 Web site for XXYY, hoping that other families would find it.  She managed to find three other families and together they began our list serve, 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.