TSSUS Has Something for Everyone - by Kristen McKenney, TSSUS Board Member

Hello TSSUS community! My name is Kristen McKenney and I have the privilege of serving on the board for the Turner Syndrome Society of the US. I have a somewhat unique perspective in that not only am I the mother of a child with classic Turner syndrome, but I am also a nurse and have spent more than half my career caring and advocating for adults with physical disabilities.

What I love most about TSSUS is the support that is provided to women, girls, and families during all stages of life. From new parents struggling to understand the diagnosis to adult women looking for community and age-specific guidance, TSSUS has something for everyone.

My daughter received her diagnosis in utero, and unlike a lot of other families, I stayed off the internet. This has its benefits, but also its drawbacks. Unfortunately, I did not discover TSSUS until we were already well on our way through this journey and missed out on opportunities to build our own community during one of the most challenging times in my life. I have since rectified that!

My goal is to raise awareness, provide hope for those who are in desperate need, and to give back to an organization that has poured so much into my family. Because of the guidance and resources provided, I can make sure I ask the right questions, have the right discussions, and advocate the right way for my daughter. As a mother, a nurse, and a volunteer the knowledge I’ve gained from attending the TSSUS National Turner Syndrome Conference, perusing the website, and participating in the research registry is invaluable. I hope to promote these essential assets so that all parents and women can benefit in the same ways that we have!