Today was a good day. It was a really good day. It is one of those days that I will never forget. Ava, Oskar, Lucy and I stepped onto the NBA Milwaukee Bucks court for the first time this afternoon with Justin. It is Justin’s birthday today and this was the best gift we could have had to celebrate as a family. It felt incredible! It felt like we were home. We are home.

I remember the first time we stepped on the court of the NBA Utah Jazz. It was an incredible feeling as well. It was an honor and a privilege to be a part of a NBA team for the first time and the Jazz embraced our family immediately as well as all of our Utah Rare families. I will never forget the day we had Bertrand Might with his family on the court for his 7th birthday and we met Harlie Valdez with her family in 2014. What a memory! I can remember all of our rare and undiagnosed families sending me pictures from attending the Jazz games in our seats as well as such incredible memories from both of our 2015 and 2016 Rare Disease Day events with the kids on the court! There are so many incredible memories from our time with the Utah Jazz! Thank you!

We feel so very blessed to have the opportunity to be a part of so many incredible communities. As you all know, I love my rare and undiagnosed family as well as my family. To now be a part of the Milwaukee Bucks family, we are absolutely thrilled!!  We cannot wait for our Wisconsin filing to be finalized in addition to our Utah filing. We have a lot of work to do both here in Wisconsin and in Utah.  We already have received the exciting news that both the Utah Jazz and the Milwaukee Bucks will be honoring Rare Disease Day in 2017 by having our amazing rare kids on the court for the National Anthem! RUN and the National Organization for Rare Disorders (NORD) will be working on other teams as well!

It’s interesting that today is the day that it hit me so hard that we are now living here in Wisconsin because today is a also a big day for our Utah Rare family. The Undiagnosed Disease Network (UDN) is visiting Utah over the next few days to meet our Utah Rare disease stakeholders as well as our Undiagnosed families.  Unfortunately, I was not able to be there tonight for the party. I miss every single one of our Utah Rare families. I think about them every single day. They all have an open invitation to come and visit us here in Wisconsin!

It is with a heavy heart to be passing on the torch to Anne Bruns as the 2017 Utah Rare Chair but I know she is going to rock it! Reach out to Anne in the next few weeks if you want to get more involved this year. Julie Potter and Jen Summers are Co-chairing the Rare Disease State House Event. There are a lot of other roles to get filled!

Big things ahead in Utah as well as Wisconsin!

Thank you for your continued support, love and prayers.

Much love,

Gina