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From Our Founder

Welcome to the Living with XXY Newsletter!

The photo above for issue II comes from Wroclaw, Poland. I took a trip to Poland for three weeks from the end of March to the beginning of April this year. My trip was to learn more about my love of WWII history, indulge in Polish cuisine and its traditions. Did you know the Dollar is hovering around 4.19 Polish zloty, which makes for an affordable experience with bakeries on every street corner!

A mother from Poland learned about my trip and added me to their Polish XXY Facebook group. They worked to create the first-ever in-person meet-up. It was so special to be invited and know that our community is helping bring people together of all ages and cultures.

If you are looking to host an in-person meet-up, please reach out to us and let us know you are interested. Thank you, Ryan Bregante

In This Issue:

PROJECTS/UPDATES

COMMUNITY NEWS

THE NIPT CORNER

RESEARCH CORNER

ANNOUNCEMENTS & EVENTS

Projects/Updates

The Levels Of Openness

This project aims to help those in our community know it is ok to be in the stages they might be in with their diagnosis. The quotes are from men/teenagers in our community on how they feel during these different phases. We have identified the four steps: Secrecy, Privacy, Cautious, and Acceptance.

We also understand that mothers with a NIPT diagnosis of XXY in utero go through some of the same feelings as men do about their diagnosis. By sharing this project, we hope more community members can move through these steps so they do not feel like they ever have to hide part of who they are. More awareness will turn into knowledge, and knowledge keeps us moving forward, wanting more.

Living with XXY & Positive Exposure (NYC)

Living with XXY is excited to work with NYC non-profit Positive Exposure, to create a series of photographs of individuals/families of our community. This collaboration will allow our community to highlight the shared and often overlooked beauty that is 47, XXY!

If you haven’t heard of Positive Exposure, part of their focus is promoting a more inclusive world through award-winning photography, films, exhibitions, lectures, and educational programs. More information about Positive Exposure can be found HERE

If you/your family is interested in participating, please complete the following form. We need at least 10 people intersted to setup a time and date for the photoshoot in Harlem, NYC at the Positive Exposure studio.

Community News

Max recently shared his story publically for the first time on his Instagram. More men like Max are coming forward to share their stories, knowing a community is here for them.

A huge weight was lifted off his shoulders he never knew he was carrying. After talking with Max, we discussed how it feels to open up, as his Instagram was flooded with support.

He still had some hesitations about sharing it with a broader audience. Ryan ensured he knew that the number of lives he would positively impact by opening up is significantly more than the number of people we fear will treat us differently.

Read Max’s Story

The NIPT Corner

By Allison Patrick

Thank you for sharing all of the stories about XXY! I am so glad I have found you as a resource - it has been positive, refreshing and very reassuring to read so many different stories about living with XXY!

My son Theodore was diagnosed at birth after an early genetic test at 9/10 weeks came back as positive for XXY and he is just about 19 months old now and is thriving!

We had many visits in his first year of life with specialists and counselors and he did testosterone treatments for several months during his first year to help “kickstart” testosterone production.

Our doctors have been very supportive and helpful but most have very little experience with Klinefelters and study groups / medical research seems limited. I am so happy to have found your page and the wealth of information has been incredibly helpful- thank you for all that you do!

DONATE

Research Corner

GALAXY Registry: Generating Advancements in Longitudinal Analysis in X & Y Chromosome Variations

Purpose of the study: The purpose of the GALAXY Registry is to collect and store this information for individuals with X&Y variations. Since genetic differences like X&Y variations are rare, we need to get information from as many individuals as possible to draw the right conclusions. The GALAXY Steering Committee made up of doctors, researchers, and community advocates helps direct specific goals and how the data in the Registry can be used. Our overall goal is to be able to improve health outcomes in individuals with X&Y variations and the care they receive.

What’s Involved: If you join the study, you are allowing us to use information in your medical records for research. Additionally, you can complete questionnaires or join a recruitment list for future research but you can join the registry without doing those as well.

To learn more about this study, contact 720-777-0705 or email [email protected].

Announcements/Events

Photos from our San Diego In-person meet-up.

If you are interested in helping us with an in-person meet-up in your area please reach out to [email protected]. We understand it is a lot of work to build community and we need volunteers to help. Thank you