It was an honor to share my journey with Utah Rare at the Global Genes RARE Patient Advocacy Summit along with Sharon King of Taylor’s Tale and the NC Rare Disease Network. The breakout session was on Patient Activism – Advocating at the State Level – Best Practices. I wanted to share the presentation in the hopes that collaboration will continues to build in all fifty States.

It was such an incredible experience to work with all of the rare disease stakeholders and inspirational rare families in Utah.  Thank you for your support! I will always be there for you.

I feel it is appropriate now for me to sign off as Utah Rare Chair. I am officially passing the torch to Anne Bruns and her incredible team! I wish you all the best with Utah Rare in 2017! I will be cheering you on from Wisconsin!

Much love,

Gina

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I’m here today to talk about my journey with Utah Rare. Before I begin, I would like to introduce myself. My name is Gina Szajnuk and I am the mother of three children that have been diagnosed as Undiagnosed. I am also Undiagnosed.  I am the Co-founder of the Rare & Undiagnosed Network, RUN, and the Undiagnosed Advocacy Ambassador for NORD.  I moved to Utah in the fall of 2013 and launched RUN during the summer of 2014. RUN’s mission is to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.

My family has recently relocated to Wisconsin due to my husband’s new job with the NBA Milwaukee Bucks. So, when I talk about my journey with Utah Rare, I will most definitely become emotional. Utah Rare has changed my life for the better in so many ways. It has created a family that has my heart forever and I miss them every single day.

So, let’s get going on Utah Rare’s journey.

Utah Rare was created by Cristina Might. She had the vision and the dream. She’s sitting in the audience and I would love to say a huge thank you to Cristina for being my mentor, my family and my rare sister. I would not be standing up here today talking about Utah Rare if it was not for her laying the foundation and for all of her hard work in 2015. 

 

As I said, Utah Rare was created by Cristina Might. Her vision was to raise awareness for rare disease day as well as to have a TED-style event to inspire, motivate, and spark collaboration among the rare disease stakeholders — patients, healthcare providers, researchers, companies, institutions, legislators — in our state.

I met Cristina through Season Atwater of Aware of Angels. Season is here today and I thank her for her continued hard work over the past few years. Thank you for being my rare sister as well. 

Anne Bruns is not here today but she will be the 2017 Utah Rare Chair and I know my rare sister is going to be an incredible leader. 

That said, Utah Rare started out with just four moms that had their own individual non-profits because they all had children with a rare disease. We joined forces! We collaborated!

Through collaboration, so many doors opened up here in Utah.
In the last two years, Utah Rare has turned into a huge collaboration with many incredible people. It has been an honor to work with every single one of these rare disease stakeholders in Utah. Again, collaboration is key!

 The University of Utah Hospital and Intermountain Primary Children’s Hospital serves communities in five states, throughout more than 400,000 square miles in the Intermountain West,

In July of 2014, neither hospital was chosen by the Undiagnosed Diseases Network (UDN), a program of the National Institutes of Health (NIH), as one of their medical centers.

Utah Rare’s ultimate goal was to create an Undiagnosed Disease Program (UDP) of its own through the University of Utah and Intermountain Primary Children’s Hospital. This was no easy feat as it is an extremely unusual situation in that the Children’s hospital is owned by Intermountain but the doctors are employed through the University of Utah. We needed them to work together in order to form a UDP.

What we found from discussing our own diagnostic odysseys in the beginning as mothers with rare children was that it was time to push on the system here in Utah. We needed more help from our doctors and from the current system. We were blessed that Cristina and her husband, Matthew Might, were both extremely well connected within the University of Utah and Intermountain Primary Children through their work with NGLY1.org and Matthew’s position at the University of Utah. Cristina used her connections to build an incredible 1st Inaugural Symposium in 2015. The University of Utah was extremely impressed as to how well the symposium turned out the first year. We had major players speaking at our first symposium and listening to the families share their journeys.

At the end of the symposium in 2015, the current CEO of Intermountain Primary Children’s Hospital, Dr. Edward Clark, announced their plans to have an Undiagnosed Program. They expressed a huge interest in getting the program up and running by the end of the summer of 2015. We were on our way and Utah Rare was making a difference! They heard our voices. They understood that our needs were not being met in the current system. We were all very optimistic.

At the time in 2015, my husband, Justin Zanik, was the Assistant GM for the NBA Utah Jazz. The Jazz and the University of Utah had just announced a partnership. We saw this as a perfect opportunity to approach the Jazz for help to raise awareness for rare disease day. Now that we had the University of Utah involved and the Utah Jazz involved we were on our way to making our first year’s Utah Rare events a huge success!  In 2016, we not only wanted the Utah Jazz to raise awareness, we wanted as many NBA teams as possible to support the rare community. We were able to have a total of seven NBA teams honoring rare disease day! Let’s see how many we can get in 2017! If you have interest in working with your hometown NBA team, please let me know.

The first year, Season’s photography focused on young children. Her photos were such a powerful vehicle that year that many people outside of the rare community were touched by her work. Intermountain Primary Children’s Hospital still has her photographs hanging on their walls as of today.  In 2016, Season and I came together to decide to focus on our Rare Teens. We had so many in our lives that were just suffering so much. We wanted to come up with something fun. So, we had a photo shoot with clothes, makeup and jewelry. It was an afternoon I will never forget. Season brought these twelve shy teens out of their shells and gave them confidence, beauty and power. She captured their pain as well as their strength. I am forever grateful to Season for her incredible hard work and passion. Our Rare Teen Photography Project was a huge part of why Utah Rare was such a success in 2016.

When Cristina passed the torch to me during the fall of 2015, I was about to have a panic attack. How was I going to do this as well as Cristina did in 2015?! Instead of letting my anxiety take over, I put together my top ten action items.

1. Put together an incredible Utah Rare Committee to help with the planning and execution. I cannot express how important it is to have a team working with you.
2. Schedule a meeting with the current CEO of Intermountain Primary Children’s Hospital. This was huge! We had a meeting with Dr. Edward Clark. I had the booked for us to meet alone. I asked permission to invite a few of the important people involved with Utah Rare and from the University of Utah. We had both parties in the same room together discussing the Undiagnosed Disease Program. At the time, neither side were talking directly about the UDP. This was a huge step in the right direction and we were able to get both parties –  the University of Utah and Intermountain to support Utah Rare.
3. Schedule a meeting with the University of Utah Health Science Department’s Utah Genome Project. This was huge. In this meeting, we had the commitment from the University that they would be in charge of the program. This was such a huge relief. Emily sent the invitations from the University. It wasn’t just coming from a rare mom or a rare advocate. This took the symposium to the next level in 2016.
4. Schedule a meeting with the Larry H. and Gail Miller Family Foundation. This was also huge for 2016. My husband and I went together to meet with the head of the foundation. We were not asking for money. We were asking for advice on how to reach out to the community for money. His advice was crucial to my success as Utah Rare Chair in 2016. He said if you can get one or two big sponsors, the rest of the sponsors will be asking you if they can help. We walked out of the meeting with a $5000 platinum sponsorship. It was a very blessed moment.
5. Book a date with the NBA Utah Jazz for National Anthem court appearance and 120 tickets. As soon as the NBA schedule came out, I was on the phone with the Utah Jazz to confirm our tickets and court appearance. The Jazz have been extremely generous to us the last two years.
6. Work with Season Atwater to come up with her next Rare Disease Photography Project. I discussed this already but I still cannot express how much her photography is a game changer for the rare disease community. Her work needs to get out there more and I have a dream that she is traveling the world taking photos of rare and undiagnosed people of all ages.
7. Book the Salt Lake City Marriott University Park for the 2nd Annual Rare Disease Day Symposium. This was so huge as well. I sat down with them several times to go over the symposium requests. Through our lunches and meetings, the people working with me at the Marriott fell in love with our cause and our family. They donated a lot of food, time and services for our symposium. They were extremely generous.
8. Book the Utah State Capitol for our Rare Disease State House Event and connect with the National Organization of Rare Disorders (NORD) for their $1000 sponsorship of the State House event. Most of you do this already. If you haven’t done this in your state, please reach out to NORD and get on their list. If you already do this, that is awesome.
9. Submit for the Governor’s declaration. If you do not know if someone has already submitted for the declaration in your state, submit it yourself. We are already submitted for 2017 in Utah and Wisconsin just so you know.
10. Find a marketing company to donate their time for our Utah Rare website and program. This was really another game changer for Utah Rare. Ecosyse has done all of my RUN work for me pro bono. They heard me speak in 2015 at the first Inaugural symposium. They were floored by our journey and all of the families sharing that day. They have been my biggest supports and through their dedication to RUN, they fell in love with Utah Rare and it’s mission. They did the entire program for free. They did all of the marketing materials and posters. If you can meet with different marketing companies and share your mission and your vision, you might just find one that will take you on pro bono.

Utah Rare’s event included the following:

• We had the 3rd Annual Rare Disease Day State House Event that was sponsored by NORD.  
• We had the 2nd Annual Rare Disease Day Symposium through the University of Utah.
• We had 120 tickets for the NBA Utah Jazz game as well as 30 rare children on the court for the National Anthem. 8 of them held pictures of children that had passed away from a rare disease – Rare Angels
• We had a Rare Teen Photography Project by Season Atwater Photography, Aware of Angels
• We partnered with the University of Utah Neuroscience Initiative

Utah Rare’s mission in 2016 was to bring together four of the major players in our community as sponsors and we did it!Once we had their support, we were able to bring in a lot more sponsors. 

Believe in yourself.  I really had to look in the mirror and believe in myself. I am forever grateful to everyone that volunteered their time, and materials as well as to all of our sponsors.

Collaboration. Collaboration. Collaboration. Work together. I can’t stress it enough. Please look up all of the rare disease stakeholders in your state and reach out to them directly. Email/call/set a meeting with them. Stress the importance that you are not trying to create another nonprofit. You are trying to build a coalition of rare disease stakeholders to support Rare Disease Day.

Think big. Within two years, we created something bigger than we ever expected. Reach outside of the rare community for support. We went to the most important players in the community and got them involved.

Do not be afraid to ask for help and delegate away. There is no way I could have done Utah Rare by myself. My Executive Committee rocked it and so did Ecosyse.

Stay calm and strong.  I say this a lot. I’m not always calm and strong. This is how I wish I was every single day. We all know we need to be calm and strong in order to make more of a difference. 

You can do hard things. I know every single person sitting in this room…can do hard things. 

And, I wanted to share this quote with all of you. “How wonderful it is that nobody need wait a single moment before starting to improve the world.” – Anne Frank

Thank you so much for the very blessed opportunity to share my journey with Utah Rare.