Rare Leader: Kim Hollander, Executive Director, Oxalosis & Hyperoxaluria Foundation

The Basics
Name: Kim Hollander

Title: Executive director

Organization: Oxalosis & Hyperoxaluria Foundation

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Disease focus: Hyperoxaluria can be caused by a genetic disorder, eating too many oxalate-rich foods or an intestinal disease. In some people the cause of the disease is not known but may result from changes in the way kidneys handle normal amounts of oxalate. Early diagnosis and treatment are important to the long-term health of your kidneys. Primary hyperoxaluria, type 1, type 2, type 3, and unknown. Enteric hyperoxaluria.

Headquarters: New Paltz, New York

How did you become involved in rare disease: I was working in New York City running a networking nonprofit for high-net worth individuals. Through that group, I met a father who told me about his son with an unknown form of a rare disorder called primary hyperoxaluria. He explained that his son suffered from painful, recurring kidney stones that were life threatening.  He asked if I knew anyone that could fill the Executive Director role for the foundation that represented his son—that conversation happened on a Friday. I was so moved by his story that by Sunday, I called him and said, “I don’t have anyone in my Rolodex, but I think I’m the person to fill the executive director position.” A few weeks later, I officially changed careers and moved into the rare disease space and have been with the organization for almost two decades. 

Previous career: Public school teacher, choreographer, coach, chief of staff, and entrepreneurial networking.

Education: B.S. in physical education and education, West Virginia University

The Organization
Organization’s mandate: OHF is the leading foundation in the world dedicated to finding a treatment and a cure for all forms of hyperoxaluria. We are the largest private funder of hyperoxaluria in the world.  Our single, urgent goal is to end hyperoxaluria.  

Organization’s strategy: Over the past 25 years, our main focus was funding research to better understand Primary Hyperoxaluria. Now, in addition to research we are working to provide our patient community with the necessary resources they need. Our strategy is always evolving as we mature as an organization.

Funding strategy: The list is endless, from crowdfunding to peer-to-peer campaigns, engaging supporters through events to partnerships with industry. We are always exploring new outlets to help attract new donors into our disease space.

What’s changing at your organization in the next year: OHF will be launching Centers of Excellence that combine and coordinate a wide range of services to provide multidisciplinary expertise and specialized care for patients with Primary Hyperoxaluria. In tandem, OHF will be conducting quality of life surveys to better understand the unmet need of patients, their journey, and what it is like living with primary hyperoxaluria and the impact it has on their families.   

Management Style
Management philosophy: Inspire people to solve problems. Put together the right team for each project to get it done effectively and on time. Think outside the box and be creative.
 
Guiding principles for running an effective organization: Transparency, honesty, and dedication to the organization and its mission.

Best way to keep your organization relevant: Talk with your community members and listen. Be open to change and adapt as things evolve.

Why people like working with you: I believe that anything is possible. I have an if-you-build-it, they-will-come attitude.

Mentor: On the science front, it is Christopher Danpure, a now retired professor and researcher at University College London. Dr. Danpure taught me the valuable lesson to not skip steps in science. Acting on those original principles, I worked very closely with biotech to ensure no steps were skipped throughout my tenure and in November 2020 we had our first drug approved for primary hyperoxaluria type 1 (PH1). On the business side of running a not-for-profit, I would have to say Dan Larson who ran the Polycystic Kidney Disease Foundation.  Dan was an open book whenever I had a question and gave me the courage and strength to continue even in the most challenging times. I am forever grateful.

On the Job
What inspires you: Our patients, who are my superheroes and all the clinicians and researchers who work with me to help solve the mysteries of this disease to ensure patients can have a better life.

What makes you hopeful: We made the impossible, possible and got our first drug to market. Next step is to have multiple treatments and a cure for all patients around the world.

Best organization decision: Picking the right time and platforms to work with the FDA.  I believe this is what gave the OHF the momentum to help bring new treatments to our patients in a safe, effective, and timely manner.

Hardest lesson learned: It is incredibly difficult to raise money in a rare disease and it’s something I am reminded of every day.

Toughest organization decision: How to manage a global presence.

Biggest missed opportunity: In my opinion, there is no missed opportunities; instead I’m always on the lookout for the next opportunity.

Like best about the job: Each day is like a box of chocolates. I never know what I’m going to get, and I find that intriguing, exciting, and stimulating.

Like least about the job: Wearing too many hats and not having enough funding for additional employees.

Pet peeve: All labels need to face out in the fridge and in the pantry.

First choice for a new career: Interior design

Personal Taste
Most influential book: The Happiness Hypothesis by Jonathan Haidt

Favorite movie: Grease

Favorite music: ACDC—Back in Black, hands down best album of all time.

Favorite food: Pizza and sushi, just not together

Guilty pleasure: Eating chocolate

Favorite way to spend free time: Skydiving, hiking, biking, snowboarding, scuba diving—basically anything outside