Dear Global Genes – Nicole Boice,  Carrie Ostrea  and your entire team,

Words cannot express what an honor it was to receive a travel scholarship to attend your Global Genes RARE Patient Advocacy Summit  As hard as it was to leave my three children, I was so excited to get on the plane. I was born and raised in Wisconsin, but I lived in California for most of my twenties and early thirties. California and their beaches have always brought me peace and made me feel connected to the higher powers that be…

On the morning of Thursday, September 24^th, I woke up like it was Christmas morning! In all of my life, I have never woken up for a sunrise. On that day, I was down at the beach before the sun even showed its beauty. I danced and sang as I walked the shoreline. I prayed for all of my RUN families that morning and I asked for the next two days at the Summit to be two GOOD days. I prayed that I would meet people in the rare community that will inspire me to keep going on this difficult journey of the unknown. I prayed that I would learn new things about the rare community and what the future holds for all of us.

My prayers were answered! Your Summit surpassed my expectations. Your Summit was first class all the way! The speakers were all extremely interesting and very inspiring. The award winners made me cry during their speeches. My goal of attending the Summit was not only to listen, learn and connect, I wanted to meet David Glazer of Google Genomics.  Your Summit allowed for people to network and build relationships. I am now communicating directly with David via email. Thank you for connecting us!

Thank you for inspiring me to take my foundation to the next level. Thank you for inspiring me get my head down and get going on fundraising for RUN. When I started RUN, I was so naïve. I did not realize what it meant to start an actual foundation. In the last year, I have learned so much and I have worked so hard. I have done this all without funding. I started something that has grown into something so special and so needed. RUN is making a difference in the lives of rare and undiagnosed families. I now have families that I MUST help and I MUST take care of as soon as possible.

When I started RUN, my mission was to “bridge” everyone together in the rare community. Thank you for encouraging collaboration between foundations and not competition. I have always wanted to have everyone in the rare community work together to make changes for the lives of families living in the world of rare and undiagnosed. Your Summit gave me hope that everyone is willing to work together. We are all on this journey together. As Nicole said in her very kind email to me after the Summit, “It has been an incredible journey working side by side many amazing, committed, tenacious and courageous people – like Carrie. We are all in this together. What was said at our event over the weekend, which is absolutely true, in rare disease, we have the opportunity to work with the most selfless and courageous people on the planet. There are so many challenges and negatives that are thrown everyone’s way who are in this fight…It is so cool to know that one of the benefits of being in this community is that we are surrounded by some of the most incredible, inspiring human beings in the world How truly blessed…It is what keeps everyone in the fight…right!!?!?!”

Thank you, Global Genes, for your hard work and your dedication to bringing together the rare community and for encouraging us all to work together.

I am proud to be on this journey with everyone fighting the fight for the rare and undiagnosed community! I can’t wait to see what changes happen for the rare community in 2016!

Thank you again for blogging my Letter to All Mothers over a year ago!

Much love,

Gina

About Gina: Gina Szajnuk was born and raised in Madison, Wisconsin and moved to Salt Lake City, UT, where she serves as the Co-founder and Executive Director for the Rare & Undiagnosed Network (RUN). Her three beautiful children, each of whom live with a rare and undiagnosed disease, continue to inspire and motivate her as she fights for clinical whole genome sequencing to be covered by insurance companies. Currently, Gina and her family of five, as well as her parents , are having whole genome sequencing done through the Utah Genome Project. Gina was recently asked to be the Utah State Ambassador for NORD (National Organization for Rare Diseases). She served on the Executive Committee for Utah Rare 2015. She is now the Chair of Utah Rare for 2016. She is on the Program Committee for the National Ability Center.