Dear Living With XXY Community,
Let’s go back to November 6th, 2019: Living with XXY was born, as an official nonprofit organization. We are very thankful for our community and both the friendships and professional relationships we have made. Slowly, the outdated information and photos given to newly diagnosed individuals is starting to change. Most of us know all too well the same feelings of being scared, confused, and hopeless. Each and every day, our community has an increased chance to save a life. You are helping us provide real-life, everyday information by highlighting success stories and focusing on the positives. Though it often feels very vulnerable and overwhelming to step out of the shadows, your stories are a constant reminder that everyone has a voice to share.
Brett Jones, age 24, chose to step out of the shadows in a recent podcast. He said, “We were in the spotlight for all of the wrong reasons when we were younger.” He was able to articulate the way many of us feel and it gave me chills down my spine. We have created a space for people to reappear in that spotlight as better versions of themselves while building up a brighter future for the next generation.
In the midst of a global pandemic, our community came together in the toughest of times and continues to offer support to one another all across the world. Marci, Kelsey, Daniel, and I have worked extremely hard to bring significant changes and increased awareness to people living with Klinefelter syndrome/47 XXY. Many of our accomplishments are printed on the back. We were credited in a publication by The University of Oxford in the textbook, “Discovering Human Sexuality.” This is one accomplishment of which we are particularly proud.
We have big things in store for 2021.
- We are working with Getty Images to build a database of real-life imagery that truly represents those living with Klinefelter syndrome.
- Our documentary series continues to film, casting a spotlight on the amazing people of our community.
- We are working with a team of creatives to build a usable self-advocacy tool kit, building a guide about acceptance, communicating you or your child’s diagnosis, and much more.
Our team of volunteers believe that with your help, we will continue to make a difference and that one day, everyone affected by a chromosome variation can feel proud to be themselves. The stigmas of the past will not take away the voices of the future.
Founder & President
Ryan Bregante
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“I reached out on Instagram in the middle of 2020. There I connected with Ryan and Kelsey who mentored me through a transition they both have experienced. I gained measurable confidence, from their experience, to be a self-advocate in the doctor’s office. There I requested from my doctor’s options to go on TRT injections and I was supplied the courage to go through with it! Since going through this transition I’ve been given the adequate energy to thrive, live, and pursue my dreams. I feel strongly that as I continue to grow and learn to be open about having XXY that I may serve others as Living with XXY has selflessly done for me.” -JT. JT’s Story Click Here
“Like most moms in my situation, I was devastated when my son was diagnosed with Klinefelter Syndrome in utero. As a biologist, I knew it already from college classes and medical books (the ones that also show the typical scary pictures). My OB was really cold when delivering the news. The geneticist immediately gave me the phone number to the abortion department. Therefore, I began doing my own internet search. I immediately found a community called Living With XXY, who was ready to help and connect me with several XXY moms.
Ryan’s name was given to me from 3 different people as well as from a European XXY support group. I immediately found his YouTube videos and remember spending one night watching them all. Ryan immediately connected me with local families and was happy to invite us into his home in San Diego, CA. We discovered that indeed, this was not scary at all and that this was a life worth living. That termination was an absurd idea.
My baby boy was born 5 months ago, and he is simply wonderful! He is reaching milestones, healthy, and especially super happy! In those early days of discovering Klinefelter syndrome, I was very vulnerable. I am so glad to have met Ryan and the other few families that helped me make the right decision. Thank you so much for sharing awareness and for saving lives worth living!” -XXY Mom
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