I have been blown away by the generosity of strangers over the past few years. The power of love from friends and family helps more than you will ever know during the darkest hours. I know Stephanie and Gabe Valdez know exactly what I mean by this.

However, the power of COMPLETE strangers during this time can change your world!  My journey with Katie Nuffer and Harlie Valdez have brought so much more out of what I ever envisioned RUN to be. Family.

My bond with new families joining RUN feels like a dream come true. Family.

My journey over the past six months with the Utah Rare families surpassed what I knew was possible in the rare and undiagnosed community. Family.

My time spent last week at the American College of Medical Genetics and Genomics (ACMG) conference with all of the geneticists and genetic counselors there to talk about the future of the medical system blew me away. They too can become family to us in the near future. Regan, you know you are my family.

We need to come together to make change.  There is momentum right now. There is a need for change NOW.

We can do this together. We need to do this together.

There is way too much heartbreak in the lives of the rare and undiagnosed.

There is way too much financial strain and emotional drain.

There is way too much pain.

There is way too much death in the lives of the rare and undiagnosed world. We love you Charlee.

Let’s all come together to be family. Let’s change the lives of the rare and undiagnosed.

Much love,

Gina