We look forward to producing our newsletter more frequently for all of you. We are very active with social media and understand that algorithms constantly change. We plan to focus on the details in each newsletter so that we reach our entire community.
As a teenager, reading out loud was extremely difficult for me. Despite my fears and struggles, I have built the courage to be a guest lecturer at Long Island University, Brandice University, Kean University, Hunter College, and NYU. These opportunities to share the lived experience with educators and future professionals are essential for change.
Starting this summer, we are back to planning in-person meetups! I can’t wait to get back on the road and meet you all!
Thank you, Ryan Bregante
In This Issue:
PROJECTS/UPDATES
COMMUNITY NEWS
DONOR NOTES
RESEARCH CORNER
ANNOUNCEMENTS & EVENTS
Projects/Updates
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 in our fantastic 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. Check out a Ted Talk from their founder, Rick Guidotti. HERE
Our event will occur on August 19, 2023 in East Harlem at the Positive Exposure studio. If you/your family is interested in participating, please complete the following form. We are hoping to get 15 families to join us in this adventure!
“I’m proud to be this person. I want people to know who I am; it’s a big part of my life.”
Community News
Pam Winters is the mother of Brian Winters, who lives with Klinefelter syndrome. She recently wrote and published a children’s book called “X-tra Special Me: A book for little boys age 2-6 with Klinefelter syndrome.”The book” is written through the eyes of a young boy with Klinefelter syndrome and serves as an introduction to this genetic condition by highlighting the positive traits found in boys born with an extra X chromosome.” It helps “parents… foster positive self-concepts in their sons by celebrating everything that makes them unique and special.”Net proceeds from the book sales will be donated to Living With XXY.
“We started our non-profit, Colton’s XXXtraordinarY Cause, in 2017 in honor of our son Colton who was born with 48XXXY, with a vision of bringing awareness and research to a diagnosis that was misunderstood, and those living with these conditions completely underserved. Crossing paths with Ryan shortly after and hearing about his initiative to create Living with XXY was our mission come to life and was exactly the kind of organization we knew we wanted to rally behind. It has been our pleasure watching him bring hope and peace, in otherwise scary times, to those who are newly diagnosed, and helping families find the courage to come out of the shadows and share their stories. The positive impact Living with XXY has had for the X&Y Variation community has undoubtedly been life changing for many, and we are excited to see it play a huge role in the evolution of how X&Y variations are handled in the medical field, in education, and within the general population. We are among the biggest Living with XXY cheerleaders, and could not be more honored to be able to support their work.”
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 galaxy@ucdenver.edu.
We’ve heard that there may be interest in virtual support groups and/or guys’ chats, so we’ll try and see how it goes!
May 9th, we will host our first virtual parent support group from 12-2 pm CST. Video call link: HERE Or dial: (US) +1 224-938-1568 PIN: 471 306 865#
May 17th, we will host our Adult Men 47, XXY chat from 5:30-7:30 pm CST. Video call link: HERE Or dial: (US) +1 315-925-6252 PIN: 490 377 606#
Kelsey Fuglsby will facilitate groups. Kelsey is an experienced support group facilitator, mom to 13-year-old Elliott (who has 47, XXY) and a Living with XXY volunteer. For questions, email Kelsey@designforgeonline.com
