Today marks the FOURTH anniversary of Living With XXY as a nonprofit 501(c)(3) organization. I never imagined this would become what it has today, and it has given me the confidence to believe in myself.
Recently I wrapped up the final trip of 2023 on behalf of Living with XXY. The purpose of this trip was many-layered.
We prioritized sharing the mission and important work of Living with XXY, while learning more about professional services and clinics that benefit our community.
We focusing on creating collaborative relationships to improve and develop support systems, and, of course, providing opportunities for our community to gather and connect in person.
Thank you, Ryan Bregante
COMMUNITY NEWS
MAKING AN IMPACT
NYC AND BOSTON PHOTOS
RESEARCH CORNER
For several months leading up to the trip to NYC and Boston, Ryan and I focused on planning community meet-ups in and coordinating professional meetings/guest lectures, all while organizing the logistics that accompany any travel. I recall standing outside of a Denver spa (while on vacation in February) talking with the president of Positive Exposure to ensure our community would not miss such a fantastic opportunity! This trip has been on our minds for a long time, and in preparation, each meeting was intentionally selected, diligently planned, confirmed, and mapped out.
The immense honor it is to represent and support Living with XXY in settings both near and far. And equally important (as a mom to a 14-year-old son with XXY) the honor of simply being a member of this amazing community.
The sheer joy and genuine support that comes from meeting another XXY guy, parent, or partner. The proof was seen while sharing experiences, the understanding looks, laughter, and “that’s me too!!” exclamations after only MINUTES of knowing each other. It is true with this community; you are no longer alone.
The importance of showing up for our community: Not everyone will feel comfortable sharing or being in front of the camera. But if and when we’re ready to leap, the positive impact will be felt for years and in ways we can’t even begin to understand.
And some people want to help by spreading the word, researching, supporting the mission, and partnering on projects. But these groups need opportunities to learn more about our lived experiences, organization, and the needs/concerns of our community.
These have been constant themes in every community and professional meeting. And I know they will guide and motivate me for years to come.
If it isn’t apparent, Ryan has dedicated his life to this community and the mission of Living with XXY. Trips like these would not happen without his willingness to be open and share his entire life story. It may not be obvious, but it doesn’t come easy for Ryan. I’ve watched him learn as much as humanly possible about clinics, providers, and services. I’ve seen how seriously he takes every phone call, text, or email request for help. I’ve listened as he asks the fundamental questions on behalf of our community. I’ve observed his constant creativity in addressing the needs of our community in hopes of making life just a little easier for the next generation. He does not take his role lightly, and his commitment to our community knows no bounds.
The work of Living with XXY and trips like this will have positive impacts that are too big to comprehend. The sharing of our lived experiences and the voice of a community with over 100 current and future professionals will not go unnoticed. Partnering with students, nurses, and genetic counselors on long-term projects to help fill the gaps in service areas will not go unnoticed. And most certainly, creating space for XXY guys, families, and partners/spouses to connect genuinely will not go unnoticed.
With the support of the community, I am looking forward to continuing to build on the momentum of 2023 and sharing our wonderful Living with XXY community with the world.
In gratitude and with excitement for the future,
Kelsey Fuglsby
Volunteer and Mom to Elliott (14-year-old with XXY)
Today marks the FOURTH anniversary of Living With XXY as a nonprofit 501(c)(3) organization. I never imagined this would become what it has today, and it has given me the confidence to believe in myself. If my voice has made a difference, then this is why I speak so strongly about others sharing their stories.
My journey started on September 13th, 2017, when I made my first YouTube video, putting myself out there among all the dreadful images and drawings, outdated text, misinformation, and old research papers.
Almost everything I read online and the photos I saw from June to September 2017 made it difficult to understand why XXY presented this way. I told myself that I couldn’t be the only person who has had to work three times harder than everyone else, and there had to be others like me. I told myself I had a voice, and now was the time to use it.
Since the summer of 2017, I have had the opportunity to meet over 800 men and boys with XXY in person and have talked to thousands worldwide. Here are just a few of the many accomplishments we have been able to do in four years.
Save 300+ babies from termination.
Remove the Google Image.
Provide a safe space for people to share their stories.
We created the first brochure with real people from our community.
Published in Oxford University Press.
Podcast with over 100 episodes and 35,000 plays.
YouTube videos surpassing 2,600,000 views.
My most difficult challenge is asking for money to support this community we have created together. Raising donations to support our Nonprofit has always been difficult. If Living With XXY has impacted your life, I ask you to donate this year.
We have a donor who would like to support a matching grant of up to $30,000.
Mail a check:
Keep it simple by mailing a check directly to our address.
Living With XXY
3960 West Point Loma Blvd #H240
San Diego, CA 92110
Facebook and Instagram:
Facebook donations are a great way to help spread awareness while having the support of your family and friends know about the cause. Facebook birthdays are also meaningful. Instagram also has ways you can create a fundraiser.
Direct Website:
If Facebook is not for you, we have a direct link to our matching grant campaign we just kicked off.
Information: Must have an X & Y chromosome variation.
Age Range: 18+ years.
Must be able to speak English.
Sponsoring Institution: University of California San Francisco.
Principal Investigator(s): Julie Harris-Wai, PhD, MPH (Julie.Harris-Wai@ucsf.edu)
Primary funding source(s): University of California San Francisco, Genetic Counseling Program.
The goal of this research project is to understand the experiences and attitudes of individuals with X & Y chromosome variations and their perspectives on routine prenatal screening for these variations. Perspectives of those living with X & Y chromosome variations are often missing from messages and educational materials provided to families undergoing or receiving results of prenatal screening.
The results of this project will be used to inform healthcare providers how to best communicate about X & Y chromosome variations with their patients and to improve educational materials.
As prenatal screening for genetic disorders advances, more laboratories are reporting about X & Y chromosome variations. Perspectives are necessary to ensure that these results are delivered in a neutral, ethical manner that is best for patients, providers, and society. People living with X & Y chromosome variations have a range of experiences and also have experienced many misconceptions around their variations.
Gathering experiences and perspectives of individuals iving with these variations will help inform medical providers about how to better communicate these results. A long-term goal is that this data be used to shape the educational materials and recommendations around reporting prenatal screening results for X & Y chromosome variations.
What’s Involved: Participation in this research will involve a) taking a brief online survey of demographic information and b) participating in an interview by telephone or Zoom.
This interview will focus on themes such as the important aspects of living with an X or Y chromosome variation, what should be highlighted when communicating with patients, the inclusion of X & Y chromosome variations in prenatal screening programs, and experiences with medical providers.
Participants will also be asked to take a look at an educational instrument about X & Y chromosome variations and provide their feedback. Interviews are expected to last 45 min. to 1 hr. Participants can enter their name into a raffle to win a $50 amazon gift card. We will be raffling off two gift cards.
Contact Information: Gabrielle Wright at gabrielle.wright@ucsf.edu
