So, You Want to Start a Rare Disease Nonprofit? Here's 10 Things to Remember


I am the mother of three children diagnosed as “undiagnosed.” I am undiagnosed as well. We live in the world of the unknown. We live in a diagnostic odyssey times four. It is absolutely devastating to not know the root cause of our disease process. It is devastating not one doctor knows how to treat our symptoms.

Along our hopeful journey to receive diagnoses, I met Dr. Reid Robison, CEO of Tute Genomics. He and I partnered to start the Rare & Undiagnosed Network (RUN), a 501(c)3 nonprofit. We have been around for two years and have yet to solicit for funding. Currently, we have three major programs generously funded by our Utah Rare sponsors, through scholarships from the National Ability Center (NAC) and by our RUN board members. RUN’s three programs include our Utah Rare events, our NAC events and Season Atwater Photography/Aware of Angels Project. This past year we had a Rare Teen Photography Project, #RareTeens.

RUN collaborates with other amazing nonprofits so we can build the rare disease and undiagnosed community together. Through Utah Rare, RUN has been blessed to partner with many of the rare disease stakeholders in Utah. We all worked together to raise awareness for Rare Disease Day. I was honored to be the Committee Chair for Utah Rare in 2016. Again through collaboration, the National Organization for Rare Disorders (NORD) has recently blessed me with the opportunity to be their Undiagnosed Advocacy Ambassador. RUN’s mission continues to grow because we believe together we are stronger and our message is more powerful.

Since starting RUN, my children now have an enormous inspirational family and support system. It was a dream to build a network for families focused on rare and undiagnosed diseases. It was a dream for my children to know other children similar to them so they did not feel so alone in life. The families living in the rare disease and undiagnosed world face emotional, physical and financial challenges. Our organization was created to help families with all three of these issues as well as advocate for whole genome sequencing (WGS) to be covered by insurance in a clinical setting. We have built an incredible network of geneticists, researchers and many different specialists across the country.

The experience of starting an organization from the ground up and leading as its executive director has undoubtedly changed my life, as well as our entire family’s. While developing and growing a disease and research-focused organization is not an easy feat, it is also not impossible and often worth the effort, especially in the rare community! Whether you have decided to start a nonprofit for your child’s rare disease or your own, here are ten things in my experience that have helped immensely in the process:

1. Believe in yourself. If you can look yourself in the mirror and commit to giving your heart and soul to your nonprofit, then continue on to the next step.

2. Be very realistic about the time commitment. If you can look yourself in the mirror and commit to not gaining financially for your own family while spending thousands of hours on your nonprofit, continue on.

3. Give your gift to the world. RUN is solely volunteer based and we are motivated by our mission statement.

4. If you want to start a nonprofit, you need to 100 percent believe in your mission statement. Many people thought the Rare & Undiagnosed Network’s (RUN) mission statement was too grandiose. Well, I believe whole genome sequencing (WGS) should be available in a clinical setting and covered by insurance companies. I believe in connecting families through networking and sharing data, as well as helping them emotionally and financially.

5. Collaboration. Collaboration. Collaboration. Please only start a nonprofit if you have the time and energy to commit to the bigger picture. It is hard work and very competitive. I believe in collaboration, not competition. If you believe you can work with anyone and everyone in your same space, then go for it! If you believe you can change policy and fight harder than you ever fought before, go for it!

6. Research. Educate. Empower. Research everything in your space. Educate and empower yourself. You can only make a difference in the world if you believe you can make a difference in the world. I doubted myself so many times. I had people telling me I should not, could not and would not change the world many times. I listened and I cried. Now, I believe in myself. I have seen the difference RUN has made. It has given families a voice and a support system. I will not let the negative energy into my Rare & Undiagnosed Network. I will rise above the competition and negativity to focus on my mission statement and my families in need of help.

7. Do not be afraid to ask for help. This was a huge lesson for me and it took me a long time to ask for help. I thought I was all on my own with RUN. In the last year, I have a team just as dedicated to my mission statement as I am. I could not continue on this journey without the love and support of my advisory board members and my RUN families. Their dedication to RUN has been life-changing and we are all in this together. We are working together to raise awareness, push on the medical system and make our lives better for our families.

8. Approach each day with thanks and accept your limitations. Accept your limitations in order to maintain your focus and your energy. This was another lesson taught to me by one of my mentors. I have to admit I still need to work on this. I continue to push myself, not only because we are still desperate for answers for our family, but because there are RUN families struggling daily with no clear path forward. How does RUN stop when there are so many challenges for our children?

 9. Accept and embrace change as it happens. As I’m writing this blog, I’m in the process of moving from Utah to Wisconsin due to my husband’s, Justin Zanik, new position with the NBA Milwaukee Bucks. I committed to Utah Rare and all of my RUN families in Utah, but now we are moving. I have to accept I will not be there to run to Primary Children’s Hospital when one of my families is admitted in the emergency room or comfort them with hugs when they need it. I have to accept my support, love and prayers will comfort them from miles away. I have to accept and embrace RUN’s future in the Midwest. I have to embrace this opportunity to grow and expand my mission statement to the Midwest area. I have to embrace it, but I am still heartbroken.

10. Stay calm and strong. Do not give up. There will be days you want to give up. There will be days when you want to curl into a ball on the floor and cry your eyes out. There will also be days your heart will be filled with so much love you cannot control your happy tears. Running a nonprofit is an emotional rollercoaster. Prepare your heart for the pain as well as the joy. Celebrate in the love that you will surround yourself with through the families you support. Know they love you and appreciate every single minute of your time and their lives will forever be changed by your grace, love and support.

“How wonderful it is that nobody need wait a single moment before starting to improve the world.” – Anne Frank


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