From Our Founder

Welcome to the Living with XXY Newsletter!

Since our last newsletter, I have been working to secure speaking events at NYU, Boston University, Mass General, Lurie Children's, and other locations this fall. These speaking opportunities are essential to help connect what a lived experience can be like.  

Please let me know if you hear of locations that could benefit from a presentation or guest lecture. We hope to continue sharing our nonprofit and experiences with those willing to listen.

I have also enjoyed sitting in on a few capstone projects by students studying genetic counseling. I'm thankful for these projects as they continue to bring awareness/share the voice of our community with current and future medical professionals.

Summer is also a time to have fun and do the things we love. I recently started a film photography project. Using natural light, I will capture portraits of our community in black & white 120mm film—a lifetime project to one day dream of being shared in galleries worldwide.

Ryan Bregante

In This Issue:

PROJECTS/UPDATES

COMMUNITY NEWS

THE NIPT CORNER

RESEARCH OPPORTUNITY

ANNOUNCEMENTS & EVENTS

Projects/Updates

Our Podcast

#55 - Adult With XXY  

Dylan Mathis

#18 - Mother and Son

Apirl and Brett Jones

Rick Guidotti,

an award winning photographer, worked in NYC, Milan, Paris and London for a variety of high profile clients including Yves St Laurent, Revlon and L’Oreal. His work has been published in newspapers, magazines and journals as diverse as GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic Monthly and LIFE Magazine.

Rick founded POSITIVE EXPOSURE after a chance encounter in 1997 with a young lady living with albinism at a bus stop in New York City. As an artist, Rick was taken by her extraordinary beauty. In a quest for a better understanding of albinism, Rick sought out medical textbooks, where he was affronted by the dehumanizing images depicting disease, lacking all humanity. It was this experience which forced Rick to turn his lens from the more traditional ideas of beauty, to the beauty and richness of human diversity.

Rick has since spent more than twenty years collaborating internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral or intellectual differences.

Community News

Brandon Hnedak

During our interview, Brandon said he loved miniature designs and developed a passion for taking things apart as far back as he can remember.

In 2010 after buying his first watch, a fake Rolex, he started taking watches apart and customizing them.

He attended Cal State San Marcos from 2014-2016, majoring in humanities with a minor in technology and design.

The initial concept started with after-school work with his teachers. He asked them for help because he knew he needed to learn more after school. Understanding his needs, his design, typography, and sculpture teachers would spend the time to help him.

With a push of confidence from his drawing teacher, it inspired him to draw a company logo for a class project that revolved around his obsession with watches.

Edge Watch company established itself after a successful Kickstarted in 2017. They are currently sold out.  

Brandon’s Instagram

Our Beautiful Rainbow Baby

Anna Lopatkiewicz-Kowalski is the mother of four children, three living and one heavenly rainbow baby. While Anna and her husband thought their family was complete after two children, they were surprised with a third, unexpected pregnancy.

Tragically, they lost that baby 18 weeks into the pregnancy due to an unknown cause. They were devastated. Seven months later, Anna became pregnant again, with a rainbow baby. This is her story of receiving a prenatal diagnosis of 47, XXY, and how the family is doing now.

Hi Ryan, I hope you are doing well. My son is born now and we have confirmed his Klinefelter diagnosis.

I am not ready to share to the public yet but I just wanted to tell you that your page saved my sons life. I can’t believe the doctor made me consider to abort him. He is a perfect three month old and I love him so much.

I was just now playing with him and we were listening to the song: with my own two hands from Jack Johnson and I thought about you and how much you have done “ with your own two hands” how many lives you have saved already.

I hope my son decides to create awareness aswell and will contribute to normalize this so common diagnosis that should never mean a death sentence for any unborn child.

The study: This research study is being done to learn more about how fat is used as a source of energy in males with XXY compared to typical males. For this research, we are looking for guys with and without XXY who are 15-25 years old and are not on any cholesterol medication. The study includes 2-3 study visits at Anschutz Medical Campus (Aurora, CO) over 1-2 months.

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.

Screening visit: Blood draw, exam, bone density scan, maximal exercise testStudy visit (1 for controls, 2 for XXY): Exercise test on treadmill, blood draw x 2, muscle biopsy from leg. Monitoring diet, sleep, and activity at home before the visits for XXY only: fenofibrate medication for 1 month

Location:  Anschutz Medical Campus (Aurora, CO)

Compensation: Hotel if needed. Up to $375 for healthy controls and up to $700 for men with XXY.

More information: Contact: [email protected]

Welcome to Living with XXY’s Summer of Fun! We value in-person connections and are thankful so many of you do too!  We have meetups planned for the Midwest listed below and in our next newsletter details about NYC and Boston in October. These locations were created around events and speaking engagements in those specific areas. We always act efficiently with time and money and pack as much into our visits as possible!!

We agree more in-person meetups need to happen—and they will! But we will continue to combine lectures, conferences, AND meetups, as coordinating these events requires a lot of time and energy! If you’re interested in helping support an in-person meetup, please consider donating or volunteering to help us continue supporting our amazing community!

Mark your calendars for our Living with XXY Chicago Meet-up on 8/12/23 from 11-3pm at The Thomas J. Richardson Park 1950 Westleigh Dr, Glenview, IL 60025. Ryan Bregante will be here in person. Light snacks and drinks will be provided. For more information or questions, contact Kelsey at [email protected]

Please mark your calendars for our Living with XXY Wausau Meet-up on 8/15/23 at 6pm at Wausau on the Water 1300 N River Dr, Wausau, WI 54403. Ryan Bregante will be here in person. For more information or questions, contact Kelsey at [email protected]

Mark your calendars for our Living with XXY Minnesota Meet-up on 8/20/23 from 1-4pm at Snail Lake Regional Park. Ryan Bregante will be here in person. Light snacks and drinks will be provided. Remember to bring your bathing suit and towel. For more information or questions, contact Kelsey at [email protected]