From Our Founder

Welcome to the Living with XXY Newsletter!

August was full of activities travleing 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 avaiable 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.  

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 from 15 to 25 bodies use fat as an energy source.

Toby’s mother Jennifer briefly talks about how they got ready for the study in the begining of the podcast.

More information about the study please contact: [email protected]

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 just found your YouTube channel. 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 talking with Aaron, I learned he had mentally given up and thought about suicide. His reaching out was a cry for help, though I didn't know it then.

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. Brian was not diagnosed until his adult years. Pam hopes to continue to write books for all ages.

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 (I am nervous) is only a few weeks old and here because I chose to talk about XXY on YouTube.

Never in a million years did I ever think I would have this kind of impact on human life. After this photo, I could enjoy holding him and letting him know he would change the world.

Starting in August, I've made it a goal to meet with each Klinefelter clinic in person. I want these clinics to be well aware of what Living With XXY is doing and focus on building relationships with these medical teams who care for members of our community. 

Lurie Children's Hospital has announced the opening of a new Klinefelter Clinic for Pediatrics in Chicago. They hope to start enrolling in November of 2023. Courtney Finlayson, MD, leads the clinic with Psychologist Jaclyn Papadakis, Genetic Counselor Allison Weisman, and project coordinator Danielle Lee.

To learn more, contact Danielle Lee at 312-227-6203 or email [email protected].