“Over 350 individuals and organizations worldwide were nominated by their peers for a RARE Champion of Hope award for their notable efforts in rare disease advocacy, science, collaborative sciences, and medical care and treatment. From the extraordinary list of nominees, members from the Global Genes Board of Directors, Medical and Science Advisory Board, and other key partners selected the recipients to be honored at the 5th annual Tribute events.” – Global Genes

September 24th, 2016

Acceptance Speech by Gina Szajnuk

Words cannot express how honored I am today to receive this award.

In the summer of 2013, I almost lost my daughter because no one believed me that there was something wrong with her. If it wasn’t for my husband and me refusing to leave the ER, she would not be here today. In 2014, I entered the world of Rare Disease Advocacy because I never wanted another family to go through what we did. In just two years, I have met the most inspirational families. I say it a lot that I have my family and I have my rare family.  I am so thankful for both of them.

Thank you to Global Gene and to Nicole. I want to especially thank Nicole for coming out to Utah to meet our families. It meant a lot to me as well as to all of them.

When Ava, Oskar and Lucy see me sitting at my computer, they know I am taking time away from them to help other rare and undiagnosed families. My mission has always been to build a rare family and a rare network for them. We are all in this together and through collaboration we can push on the current medical system that we all know does not work for our community. Together, we can make policy to help our rare community. Collaboration. Not competition. Collaboration is key to the future for our rare community.

I dedicate this award not only to my three amazing undiagnosed children whom suffer in pain daily and to my husband that allows me to invest my heart and soul into the rare and undiagnosed community but to all of my RUN and Utah Rare families that have touched my life in ways I can never repay. They all have my heart and I will fight to the end of the earth for every single one of them. I would name them all but I would go way past the three minutes allotted for my speech today.

There is a quote by Mumford and Sons that sums up my advocacy work.

In this body we will live
In this body we will die
Where you invest your love
You invest your life.

I have invested all of my love into RUN and Utah Rare and my life mission is to help the rare and undiagnosed community.
Thank you for the very blessed opportunity to be here today.
Much love,

Gina