Lanya's Blog

Life can change in an instant, and for me, that moment came during what I thought was a routine eye exam. My son’s diagnosis with Usher...

A few weeks ago I was featured in Parents Magazine, sharing my tips for a more inclusive Halloween . I shared a lot of tips from how to...

I’ve thought about writing this blog for a long time but it’s a vulnerable and controversial topic. I mentioned my journey with IVF/PGD...

Every third Saturday of September marks Usher Syndrome Awareness Day, and this year, it falls on September 21, 2024. This day always...

Last week was the 15th Usher Syndrome Connections Conference in Rochester, NY. I always look forward to this time. This year was full of...

As a research analyst at the Center on Reinventing Public Education, I've researched school/district response to the pandemic. I've...

September 19 is Usher Syndrome Awareness Day. It’s always a day that causes me to reflect on all that I am thankful for. Like many of...

I was asked to share my experiences and perspectives about remote learning for children who are deafblind, like my son Dalton....

Today I started the day in tears in my car, a reminder of the long emotional few weeks our family has been through. A few months ago, our...

Being Conner’s mom is such a joy for me. He has overcome huge obstacles and works so hard to achieve his goals. I can’t believe it’s...

As part of my efforts to help more families dealing with Usher syndrome, I was happy to be interviewed by Professor Amy Parker of...

I’m excited to share my podcast about raising two sons with Usher syndrome. In my first episode, I tell you a little about my family, and...

I had the privilege of attending and presenting at the first-ever Network of the Americas Conference sponsored by Deafblind International...

Todd and I were so honored to receive the Foresight Award from the Usher Syndrome Coalition in 2017. We are gratified by the recognition,...

https://news.thinkgenetic.com/2019/09/21/unraveling-usher-syndrome-through-community/?fbclid=IwAR0UR7g-45Bx_nnYtquLAl3tecqWjzuIWgE4ULyaOi...

Gov. Jay Inslee declared Sept. 16, 2017 Usher Syndrome Awareness Day in Washington. We wrote to the governor and asked him to join other...

One of the ways Hear See Hope works to raise awareness of Usher syndrome is through our lawmakers. Todd and I met with Sen. Patty Murray...

Usher syndrome has taught me so much. We have good days and days that challenge us. This week has been filled with challenges. We are so...

A link to my talking about the research study I did on self-determination.