OUR TEAM OF VOLUNTEERS
We welcome you to our wonderful team of volunteers. We share a passion for hard work ethic, work smarter not harder, keeping things simple, and making a difference. Together we bring years of experience Living With XXY. From day to day life and beyond we cover the spectrum of individuals with Klinefelter syndrome(47 XXY) who have been diagnosed throughout life. Our nonprofit 501.C.3 organization was started on November 6th, 2019. We are excited to continue to learn and grow while providing real-life resources to benefit our community.
BOARD MEMBERS
“The stigmas of the past will not take away the voices of the future.” My parents found out in 1985 via amnio that I was going to be born with Klinefelter syndrome (non-mosaic 47 XXY). I was told at 9 years old. The first time I googled Klinefelter syndrome was in June of 2017, a few months later I started the “Living with XXY” Youtube channel. In November of 2019 we became an official NonProfit. I currently live in San Diego, CA. Before Living With XXY, I was a Chef for 10 years, graduating from the CIA in 2007. I have had multiple careers since, including a freelance action sports photographer. I love spending time with my family, snowboarding, camping and hiking.
Otherwise referred to as Jack’s mom, I currently live in Fresno, California where my husband Matt, and I were born and raised. Our son Jack has a vibrant personality, intelligent mind, curious spirit, and a loving heart—undoubtedly born with the gift of joy. Jack also happens to live with Klinefelter Syndrome (47 XXY.) We love traveling around the world especially to London for Harry Potter and the Beatles. I was born with type 1 Diabetes and was an ambassador for Beyond Type 1 Non-Profit. I love riding my Peloton bike and spending time with family
Hi, I don’t have Klinefelter syndrome, but my friend Ryan does. I was born in Bulgaria and I have been living in Edwards, Colorado for over 10 years. Since finding out about Ryans’s condition I have been wanting to help him with his efforts to make change. Living with XXY is my opportunity to use my professional skills as a photographer and filmmaker. I work with many diverse companies including Getty Images, RedBull, GOOGLE, and National Geographic. In my free time, I enjoy spending time with my family. I enjoy snowboarding and mountain biking up here in the mountains.
AMBASSADORS
Nature is my therapy, when I am feeling stressed with work or life in general, you can find me in the mountains. My favorite naturalist is John Muir. One of his quotes is on a bumper sticker on my car, “The Mountains Are Calling, I Must Go.” Another Quote “Keep Close to Nature’s Heart…and break clear away, once in a while, and climb a mountain or spend a week in the woods. Wash your spirit clean.”
I am a published iphoneographer. I have been published and interviewed for my landscape photography using my iPhone
I am a published iphoneographer. I have been published and interviewed for my landscape photography using my iPhone
I am a 28 year old mom from Michigan. I live here with my husband and XXY baby, Elijah! We received prenatal testing that showed Eli may have Klinefelter’s. When he was born in March of 2020, his diagnosis was confirmed with cord blood testing. My job allows me to be with Eli most of the time, and we plan to homeschool in the future. When I’m not on mom-duty, I love live concerts (pre-COVID), good coffee and shamelessly watching guilty pleasure shows like 90 Day Fiance and The Office!
G’day, I’m Geoff and I live in Victoria, Australia. My wife and I have been married for 12 years and we have a kind hearted 9yo Border Collie named Kargi – which means Brother in Aboriginal.
I’m a chef by trade and last year started my own business: Krucky’s Fine Foods. I love to create delicious chutneys and jams, as well as Granola and a range of gourmet crackers. I also run a successful Sourdough Bread business from home and am expanding into an 100yo wood fired bakery over the next few months. Part of my dream for the business is to be able to mentor and train others in my craft.
I’m a chef by trade and last year started my own business: Krucky’s Fine Foods. I love to create delicious chutneys and jams, as well as Granola and a range of gourmet crackers. I also run a successful Sourdough Bread business from home and am expanding into an 100yo wood fired bakery over the next few months. Part of my dream for the business is to be able to mentor and train others in my craft.
MORE VOLUNTEERS
My name is Chelsea Castonguay, and I’m a professional writer and author, as well as the mom of a toddler with XXY. When I’m not helping folks share their stories about living with XXY, I keep busy helping people create amazing resumes, writing content for websites, or working on my second novel. I live in a small town in rural Maine with my son, husband, a tortoiseshell cat who’s the boss of us all, and a black lab. We also have a backyard flock of seven chickens. I’m passionate about learning more about Klinefelter Syndrome and helping this amazing community grow. I look forward to working with you and your family. If you have any questions, please email me.
I met Ryan through a company we both worked for and through our friendship, I learned of XXY/Klinefelter Syndrome. I’ve always enjoyed genetics and a love for educating people to facilitate inclusion and acceptance. My husband, son, and I live in La Mesa, California. We have a dog named Sophie who loves to go on walks at the beach. I also volunteer for Lasanga Love, which helps people in need by providing them dinner. In my free time, my husband and I belong to the plumeria society in San Diego. We travel to Hawaii as often as we can to swim in the warm, crystal clear waters.
Years ago I came to the United States from Poland to be an Au Pair. I had the chance to mesh my Polish upbringing with American culture and apply it to child care. There’s no better feeling than excitement and pride watching children grow up. I learned about XXY upon meeting Ryan when I moved to San Diego. My focus is building a successful social media platform. I grew up dancing to Frank Sinatra, attended University for International Business and I love eating napoleons (yum!). I spend my free time working on advanced yoga techniques, hiking, and paddleboarding in beautiful San Diego.
I’m a passionate volunteer who believes in the power of nonprofits to improve and serve society. With its focus on people and families living with Klinefelter Syndrome, Living with XXY is amplifying voices previously never heard from. I hope to bring my communications, nonprofit administration, and language skills to the team to help serve this community’s needs. I speak Spanish, Italian, and German. I love connecting with people around the world! I currently live in North Carolina with my husband and young son. We love to cook, create art, and do yoga together.
I’m a married mom of three boys that lives near Sacramento, CA. My youngest son, Thane, was diagnosed in utero with XXY. As knowledge spreads, we grow as part of a beautiful community. I’m here as an advocate to spread awareness for my son and other boys and men like him.
WHERE YOUR DONATIONS GO.
As a NonProfit, Living with XXY is committed to being as transparent as possible in keeping you informed about how we intend to use the money we receive from donations and other sources. Your donations allow us to continue to pursue our mission of spreading awareness, providing education, and offering hope and support to those Living with XXY.
The following represents the known and estimated expenses which have been identified, and are anticipated for the completion of our vision and goals.* The list includes, but is not limited to the expenses listed.
* This is subject to modification as the organization changes over time, and as such will be updated accordingly.
Software
Social Media
Website
Training & Certifications
Travel
Legal Work
Office Supplies
Insurance