Living With XXY September Newsletter
August Activities
August was full of activities traveling the Midwest. I experienced what it was like to be on TV for the first time during a live morning show.
You can watch Sunrise 7 HERE.
In May of this year, I spoke in front of 400 genetic counselors and medical staff at the SCGC in Long Beach, CA. The video is now available on our YouTube channel.
We need your help in finding a location for our NY/NJ and Boston Meet & Greet this October.
More info at bottom.
—Ryan Bregante
In This Issue:
- PROJECTS/UPDATES
- COMMUNITY NEWS
- THE NIPT CORNER
- RESEARCH/CLINICS
- ANNOUNCEMENTS & EVENTS
Projects/Updates
Our New Brochure
Another first for our community to have a brochure featuring people who have XXY with no stock images, setting the standard for moving forward.
Simple and easy to understand information with the positive traits was our focus for this project. Help share this brochure with your medical providers, educators, friends, and family.
Our Podcast
Toby Voige, age 15, recently traveled to Denver, Colorado, to participate in the Lipids to Fat research study by Shanlee Davis. This study aims to see how XXY boys aged 15 to 25 use fat as an energy source.
Toby’s mother Jennifer briefly discusses their preparations for the study at the beginning of the podcast.
More information about the study can be requested at Lte_XXY@ucdenver.edu.
Community News
Aaron Jelen - Giving Back
"Hi, I'm Aaron Jelen. I'm 50 and found out I had XXY when I was 36. I'm having difficulty finding people who understand what I am going through, and my anxiety is through the roof. I thought I was the only one."
After reaching out, Aaron has been on TRT for three months and said it’s been life-changing. A smoker for 30+ years, he is now two months smoke-free and has lost 80 pounds since reaching out.
He enjoys fishing and caring for his 1997 Ford F150 in his spare time.
X-Tra Special Me
Brian and Pam Winters donated a check to Living With XXY from selling the book X-Tra Special Me. Pam Winters, a special education teacher, wrote this book about her son who was diagnosed as an adult.
Pam hopes to continue writing books for all ages.
The NIPT
Life Saving Measures
In 2017, a week after my first YouTube video about Klinefelter syndrome, I received an email from a mother in Switzerland thanking me for saving her son’s life.
This is the first family to allow a photo of me with their newborn for public use. Nearly six years later, the boy in my arms is here because I decided to speak up about XXY on YouTube.
Never in a million years did I ever think I would have this kind of impact on a human life. After this photo was taken, I held him and told him he would change the world.
Research and Clinics
Lurie Children's Hospital Klinefelter Clinic — Chicago
Starting in August, my goal has been to meet with each Klinefelter clinic in person. I want these clinics to be aware of what Living With XXY is doing and focus on building relationships with medical teams who care for our community.
Lurie Children's Hospital recently announced the opening of a new Klinefelter Clinic for Pediatrics in Chicago.
Led by Courtney Finlayson, MD, Jaclyn Papadakis (Psychologist), Allison Weisman (Genetic Counselor), and Danielle Lee (Project Coordinator), the clinic will begin enrolling in November 2023.
To learn more, contact Danielle Lee at leeda@luriechildrens.org or call 312-227-6203.