Words cannot express how much the RareVoice Award means to me. It was a night that I will cherish for the rest of my life.The Abbey represents the “rare voice” speaking on behalf of patients, especially the children, who might not otherwise be heard. The Award was named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD), with her blessing. The statue was commissioned for the RareVoice Awards from the renowned sculptor Nobe, who specializes in bronze.  The Abbey is absolutely beautiful and she has already made herself comfortable in our home.  Much love, Gina
My Speech:  First off, I would like to say thank you to the EveryLife Foundation and to RDLA for their continued hard work and dedication.  I am in awe of your work and thank you for guiding all of us on the path for change.

It was an honor to be nominated with such an incredible group of advocates. It is also such an honor to be on this journey with all of the non-profits working together for a better life for our children and for our families.

I must thank my RUN family and my Utah Rare family. Thank you to each and every single one of you for being in my life and for being on this journey with our family. Julie, Roger and Cristina are here today from Utah. Thank you for being here. Thank you to all of the families that are a part of my RUN family. They struggle every single day as we all do when living in the world of rare diseases. As you know, the journey is hard emotionally, physically and financially.

Thank you to my incredible team of doctors across the United States for their continued support and for their incredible detective work. I am amazed at how many doctors are up for the fight against rare diseases. We need more to join but there is a really good group of doctors that have compassion and dedication to our community.

I have to thank my family. Justin couldn’t be here tonight due to a Bucks game in Atlanta. However, I cannot thank him enough for his support of my work, of my RUN family and of the NBA Initiative. And to my three inspiring children. I love them to the moon and back times infinity. Ava has taught me so much through her journey. I could have lost her and I would have lost myself. She continues to be the strength of our family. Oskar and Lucy are just as inspiring as they suffer in pain every single day as well.

Lastly, do you remember life before Rare? I do. I remember the innocent laughter and innocent tears. I remember the dream of having four healthy children. I remember it like it was yesterday. Well, winning this award makes all of the difficult tears worth it. RUN saved my life when I was slipping away into the darkness. RUN gave me a platform for my voice and for my mission. To be on this journey with all of you. I am so humbled. RUN is all of you. This network of incredible people. My dream. I want to honor all of you for your hard work and dedication. Every single one of you. Thank you for saving my life and thank you for your continued support, love and prayers.

Much love,

Gina