RARE Daily

Rare Leader, Kristen Davis, Executive Director, CLOVES Syndrome Community

March 12, 2020

The Basics
Name: Kristen Davis

Title: Founder, chair, and executive director

Organization: CLOVES Syndrome Community

Social Media Links:

Disease focus: CLOVES stands for Congenital, Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/Skeletal/Spinal anomalies. The syndrome shows no inheritance among families of affected patients. CLOVES syndrome is rare and variable. It can range from mild to severe. The features of the syndrome can include fatty truncal mass, vascular anomalies, abnormal extremities and scoliosis. Patients may have large wide hands or feet, large fingers or toes, wide space between digits, and uneven size of extremities. They may also have skin abnormalities, kidney abnormalities, and abnormal knee and hip joints. CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-related overgrowth spectrum or PROS.

Headquarters: Kennebunk, Maine

How did you become involved in rare disease: My daughter was born in 2002. She was undiagnosed for seven years with a condition that progressed rapidly over time. We got hooked into Boston Children’s Hospital very early when she was five weeks old. In 2004, we heard from one of the head doctors at the Vascular Anomalies Center, who said that they had seen other people who have these symptoms, but we don’t know what it is yet. In 2009, Boston Children’s identified the first 30 people with CLOVES Syndrome. Boston Children’s Hospital Vascular Anomalies Center came with the diagnosis, and my daughter Riley was one of the first people who was identified with the condition.

Previous career: Social worker

Education: B.A. in English and Women’s Studies from the University of Wisconsin, Madison

The Organization
Organization’s mission: Our mission is an improved quality of life for people living with CLOVES.

Organization’s strategy: Our strategy is to connect with as many people with the disease as possible, to provide education and support to families, to kids, to adults, and to the medical community, to provide opportunities to collaborate, and to accelerate research opportunities for people with PIK3CA related conditions.

Funding strategy: We do all the fundraising things. We do lots of peer-to-peer fundraising. We do events.  We will be participating in the Million Dollar Bike Ride this year. We also partner with industry for some of our educational needs and events.  

What’s changing at your organization in the next year:  We are proud to be a Chan Zuckerberg Initiative Rare as One grantee organization. We’ll be hiring staff, which is exciting because I am currently the one person who does all the things. We’re putting resources into prioritizing strategic planning. We’re doubling down on science and research goals for the organization. And we will hold the first international scientific meeting, which will include stakeholders in all of the related PIK3CA conditions.

Management Style
Management philosophy: I’m the only staff person for CSC. I manage our board, our Family Advisory Council, our Scientific and Medical Advisory Board, and I manage our volunteers. My management style is clear communication and expectations, with a good dash of empathy and real-life sprinkled in. I’m committed to helping the people who I manage grow and learn and expanding their capacity for change. 

Guiding principles for running an effective organization: Clear communication, providing guidance and support, and asking for feedback. We communicate a lot.

Best way to keep your organization relevant: We are invested in asking our community what they need. We do occasional needs assessments so we understand where there are gaps and how we can address them to meet those unmet needs. Another way we stay relevant is to be active on social media and use a variety of modalities to connect with people and engage with them. We also do a newsletter and direct mail and try to stay up to date and in contact with people in a lot of ways. 

Why do people like working with you: I’m a hard worker, I have a good sense of humor. I’m a problem solver, and a good listener.

Mentor: Connie Lee from Angioma Alliance. I connected with her early on when my daughter was diagnosed with a cavernous malformation, as part of her CLOVES Syndrome. Her organization is about 10 years older than ours. She’s a great source of support, information, and guidance to me as someone who’s 10 years ahead of us in the rare disease organization journey.

On the Job
What inspires you: Our community, especially the adults in our community and how they are living and coping every day. I’m inspired by stories of resilience. I’m really inspired by people who tell the truth about how hard this rare disease life can be and don’t sugar coat that. I feel like that’s important to hear. I appreciate the fierce dedication of advocates in the rare disease space.

What makes you hopeful: We have some targeted treatments that appear to be effective for some, so that’s exciting and makes me hopeful. Looking back on the past ten years to see our progress, makes me hopeful for all that we can achieve moving forward. Seeing increased awareness for all rare diseases makes me hopeful.

Best organization decision: The best decision was starting – taking the risk and jumping in to starting this organization. There were 1,000 reasons we could have not made that choice.

Hardest lesson learned:  Collaboration is not always possible and not everyone who shows up has the best interests of this organization at heart. 

Toughest organization decision: I think one of our toughest organization decisions was also one of our best decisions. We have had the new opportunity to partner with industry over the past year.  Our Board has spent time and energy discussing how to do this, in a transparent way, while also ensuring that our organization seeks the highest level of ethical conduct in engagement with industry. This has led to some great conversations within our organization’s Board and we have a policy now to help navigate these interactions. 

Biggest missed opportunity: We allied closely with one hospital early on and I feel like we missed some opportunities because of that alliance.

Like best about the job: Helping people, creating opportunities for change, and working with lots of different people.

Like least about the job: Tasks that are mindless.   

Pet peeve: People who are late and people who, if I set a boundary, push the limit of that boundary.

First choice for a new career: To be a person who names nail polish colors and to be a travel writer.

Personal Taste
Most influential book: Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann and Kristen Joiner

Favorite movie
: Dead Poets Society

Favorite music: The Lumineers

Favorite food: Sushi

Guilty pleasure: Smash Brothers on the Nintendo Switch and good tequila

Favorite way to spend free time: Exploring new places, travel with my family, being outside, ocean walks and reading.  

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