eXtraOrdinarY Kids Holiday Wishes

A Letter from our Team

Dear eXtraOrdinarY Families,

Happy Holidays to all our incredible families! We are so grateful for your participation in our clinic and research programs and hope that all your amazing kids have a joyful and memorable holiday season.

As we look ahead, 2025 marks some exciting milestones: Year 9 of the eXtraOrdinarY Babies Study, Year 5 of the INsighTS Registry, and Year 3 of the GalaXY Registry. Being part of your child’s growth and care is an incredible privilege that we deeply appreciate. We also acknowledge the extra time and effort it takes to participate in research. Your commitment makes a difference, and we are honored to have your support.

A special thank-you goes out to our amazing research teams in Colorado, Nemours, and all the clinics involved in the INsighTS and GalaXY registries. Your dedication, behind-the-scenes hard work, innovative ideas, and compassion are the driving forces behind these programs. Your efforts, though often unseen, are truly invaluable.

Stay tuned in early 2025 as we share exciting updates on new research findings and our continued work to communicate these results to pediatricians, genetic counselors, geneticists, and obstetricians. Together, we are making strides that will benefit families for years to come.

Wishing you a wonderful holiday season and a bright start to the new year!

Sincerely,

Dr. Nicole Tartaglia & Dr. Shanlee Davis

Happy Holidays from The eXtraordinarY Kids Team!

Thank you to our amazing "behind the scenes" team that makes our research program so amazing. Working with families to schedule, lead data management and analyses, submit

eXtraordinarY Babies Book

eXtraordinarY Babies: What You Need to Know When You Are Expecting or Have a New Baby with XXY

This new book was inspired by our families and the hundreds of calls our clinic receives from families just learning of the diagnosis during their pregnancy or after newborn testing. This 65 page book includes 5 chapters addressing all the "Frequently Asked Questions" from our clinic and research experiences:

All About XXY
Genetic Testing for XXY
Pregnancy when the Baby has XXY
After Your Baby is Born
Parent Perspectives and Support

The book, authored by Susan Howell, MS (Genetic Counselor), Nicole Tartaglia, MD (Developmental Pediatrician), Shanlee Davis, MD (Pediatric Endocrinologist) and Chloe Alviz (Genetic Counseling Student) is full of great information and is now available for sale at Amazon. All proceeds benefit the clinic, so buy 1 for yourself, or maybe buy a bunch to donate to local libraries and OB/GYN or Pediatrics practices? (Click on the book cover for the link; or https://a.co/d/6vkQfYC).

We are also working on similar books on all the other X&Y variations conditions, and donations to our program help speed up these efforts. If you would like to sponsor publication of a similar book on your child's condition or sponsor translation of the book to different languages, contact Dr. T.