The Basics

Name: Anne Bruns

Title: Sponsor Chair

Organization: Utah Rare

Disease focus: Coalition for rare disease organizations and stakeholders within Utah and surrounding states.

Headquarters: Salt Lake City.

How did you become involved in rare disease: My son was diagnosed in January of 2013 with Atypical HUS, a disease of the complement system that causes blood clots to form throughout major organs and primarily affects the kidneys. I spoke at a Global Genes family meetup and other conferences. I joined the board of the Atypical HUS foundation and held various roles including executive director until December 2017.

Previous career: Copywriter and editor in publishing

Education: B.A. in English from Weber State University

The Organization
Organization’s mandate: To raise awareness among the public and decision makers about rare disease.

Organization’s strategy: We hold a symposium every year to bring together families, physicians, biotechs, and various other stakeholders to create awareness and support. This year we’ll be following up with different events throughout the year.

Funding strategy: We seek sponsorships from community resources, local businesses, and industry sponsors.

What’s changing at your organization in the next year: We’ll be having more events to keep the families closer together and keep building awareness throughout the year rather than just one event.

Management Style
Management philosophy: Utilize the talents of your board and your staff. Everyone is great at something, and it’s just a matter of finding what they are good at and pushing them to be the best at what they can and trusting them to make the organization grow.

Guiding principles for running an effective organization: Transparency and collaboration. Especially with rare disease, everybody comes from different backgrounds and experiences. By being transparent with your goals, the resources you have, you can collaborate on the best ways to put that together. Understand that it’s a team focus with the greater good in mind.

Best way to keep your organization relevant: Be as visible as possible. Relying on social media, attending conferences, connecting with as many families as possible, and networking like crazy.

Why people like working for you: I like to focus on the future and how to get there. I aim to be creative in my thinking and look at all the possible ways for getting a job done.

Mentor: Carrie Ostrea, who is now executive director at NGLY1.org and Jean Campbell, of JF Campbell Consulting. I met them both the first time I gave a presentation, and they immediately took me under their wings. They both have such a strong devotion to the rare disease community. They both have different strengths that have helped me become who I am today. They supported me in speaking engagements, creating partnerships—throughout the entire process. They both have taught me different ways to see patients and companies and how to bring those two together cohesively.

On the Job
What inspires you: The rare families that I have met throughout the country. Every rare family is different, but they all fight every single day, not just to live, but to help someone else even when they are in such a low time of their lives. They are always willing to be supportive.

What makes you hopeful: How rapid science is moving, and how quickly biotechs are creating drugs.

Best organization decision: Reaching out to as many different partners as possible and creating partnerships with those outside the traditional circle. It opens a lot more doors and possibilities.

Hardest lesson learned: Not everyone has the same drive or the same desire to help bring awareness to rare disease. Learning to understand that families in the middle of a health crisis may not want to participate. It may be too much for them.

Toughest organization decision: Figuring out that what is best for your community doesn’t always fit with what you want to do. Understanding their needs are going to come first and take priority over items you may already be working on. There’s a constant reevaluation of what needs to be done.

Biggest missed opportunity: Missing out on partnerships because we didn’t have things set up in time to meet certain deadlines.

Like best about the job: Meeting the patients – I love them all.

Like least about the job: My continuous email box. I hate when there are emails I don’t get to because I feel like I’m not answering someone’s question and helping them.

Pet peeve: When clinicians don’t take patients seriously and acknowledging that they can be just as knowledgeable about a rare disease as a physician.

First choice for a new career: Patient advocacy through a biotech or CRO

Personal Taste
Most influential book: I just read Life is So Good by George Dawson and‎ Richard Glaubman. It’s about a man who learns to read at 98 years old. It was amazing. It was one of those reminders that no matter how hard life gets, you can still be happy.

Favorite movie: Draft Day. I watch it before each NFL draft.

Favorite music: Anything I can dance to – probably 90’s hip-hop

Favorite food: Mexican

Guilty pleasure: Spa day while my kids are in school

Favorite way to spend free time: traveling and anything outdoors with my kids.