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 a XXYY member representing us on AXYS’ Board of Directors.  If you have any questions please contact Jim Moore at jmoore@genetic.org.

Larry Rakowski, XXYY Board Representative with AXYS Board of Directors

Larry Rakowski is employed part-time as a freelance writer. Currently, he is working with AllOne Health, a wellness and disease management vendor based in Pennsylvania. In this contract role, Larry is responsible for responding to Requests for Proposal and writing other sales and marketing documents and presentations. Other recent projects have included the crafting of web content, and general article writing. Larry also served as a member of the Milwaukee Journal Sentinel’s reader advisory committee, where he produced opinion pieces for the editorial board on a regular basis. Full-time, he is a stay-at-home-dad (his wife Kelly travels extensively as a Principle with Accenture, the global consulting, technology services, and outsourcing firm). School volunteering, coaching, homework (again!) and general taxi services consume the balance of his days. 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 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 five years. He and his family have just recently decided to stay for the long-haul.

In addition to their XXYY son Jason, age 10, Larry and Kelly have a 12 year old 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 (weather permitting), and wasting inordinate hours watching people he doesn’t know compete in sports he himself has no abilities in whatsoever.

Renée Beauregard, an original founder and main XXYY contact

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 listerv, 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.  Now that the XXYY Project is a project of AXYS, Renée’s role is now the primary contact for XXYY families.  She also runs our support listserv, manages our social media, publishes papers on various subjects and helps AXYS with their goals.

By day, Renée has her own business as a marketing, communications and fundraising consultant.  She works with nonprofit organizations serving people in a variety of ways.  She has two children, three step-children and six step-grandchildren.

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.

 
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