The People Involved in XXYY Project

The XXYY Project is now a project of AXYS at www.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 a healthcare consulting executive with Premier, 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 chairs the AXYS XXYY Condition Specific Committee, and staffs the AXYS Clinical and Research Consortium Committee.

Larry holds a Master of Health Services Administration from the University of Michigan, Ann Arbor, 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, Larry and Kelly have a daughter, Alexis. Both children attend University Lake School, a private non-parochial college preparatory school in Hartland, WI.

In his spare time, Larry enjoys travel, reading, running, long drives in his 1975 Triumph TR6.

Carol Vigo, Volunteer, Australia coordinator

Hi my name is Carol and I am a mother from Sydney’s South West Australia.  My son was diagnosed with XXYY Syndrome when he was 3 years old.

 

Gail Decker, Volunteer and member AXYS Board of Director

Gail Decker is retired and currently doing volunteer work. Currently she divides her time between several volunteer positions including XXYY Project, AXYS Board member, co-chair of a committee on the Staten Island Developmental Disabilities Council and committee member of the Staten Island JCC Center for People with Disabilities Committee.  Brandon attends the Day Habilitation Program at the JCC.
She is mom to two, Brandon Romandetti xxyy and his brother Christopher Jr. xy and lives with her husband Bill Decker and Brandon in Staten Island, NY where she was born and raised.  Christopher lives in NYC and works as a broker on Wall Street. Bill is a Custodial Engineer at a local grammar school.  Gail loves to travel, go to the theater and spend time with her family and friends.

Laurie Milton, Moderator of XXYY Parent network Listserver

Laurie Milton, current Moderator of XXYYParentnetwork Listserv, has been involved with the XXYY Project since its inception.  Her son, Kent – xxyy age 27, 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 reside in Roseville, CA.  In addition to their son, Kent, they also have 2 other sons, Brett, 31 and Richard, 21.  They are also grandparents to 3 adorable kids.   Laurie is employed as the Transportation Coordinator for the Roseville City School District.

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.

Janeen Rubino Brumm, Volunteer, XXYY Project Facebook Moderator

 Janeen is a social media consultant at The JRB Group and a Board Member, the Community Outreach Chair and the social media manager at Sunflower Hill, a nonprofit building two residential communities for adults with special needs. 
Prior to that, she worked part-time at School of Imagination in HR and was a Medical Equipment Sales Specialist for many years before having children. Janeen has a BA in Advertising from San Jose State University and a MS in Exercise Physiology from California State University East Bay. 
Janeen and her husband Dan live in Pleasanton, CA, and have two sons, Robbie, xy, 18 & Andrew, xxyy, 20. Robbie is a freshman studying engineering at Gonzaga University in Spokane, WA, and Andrew attends a Film & Media Workshop in Livermore, CA. 
Janeen loves to travel, read, run and spend time with family and friends, preferably with a glass of wine in her hand. :)

Steve Coy, XXYY Project Webmaster

I have three sons, Jon, xxyy is my youngest. Between my son and my wife, Brenda, they have been at every xxyy conference since the beginning (maybe missed one). I am actively involved in Amateur Radio.  I hold both an Amateur Extra Class license and a General Radiotelephone (lifetime) license from the Federal Communications Commission. I am also a Volunteer Examiner for the ARRL and Laurel VEC teams.

In addition,  I’ve been an active member of the Dayton Amateur Radio Association (DARA) for many years.  I’ve served on their Board of Directors as a Trustee, Vice president,  President of the organization. I’m the current Webmaster for DARA’s W8BI Club Station (www.w8bi.org).

I also hold a current Private Pilots license and am an active member of AOPA (The Aircraft Owners and Pilots Association).  Professionally, I am a businessman in the electronics industry. I was part owner who incorporated MCM Audio in 1975. In 1979, I incorporated Consolidated Electronics Inc, where I am currently employed.  I also maintain my company’s web site (www.ceitron.com).

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 for 17 years.
She was born in Canada & currently lives in Appleton, Ontario, Canada with her husband John & Son Brodie.
Brodie is a non-mosaic XXYY 9 year old boy.

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 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 18 years.

Lita has been married for 17 years to Brian Stephenson and they have 3 sons: Jack- 14yrs old, Owen- 11yrs old, and Nathan- 6yrs 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.

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.

 
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