Rare Leader: Kristin Anthony, President, PTEN Hamartoma Tumor Syndrome Foundation

The Basics
Name: Kristin Anthony

Title: President

Organization: PTEN Hamartoma Tumor Syndrome Foundation

Social Media Links:            

Disease focus:  PTEN Hamartoma Tumor syndrome (PHTS) is a rare genetic condition that causes increased risk for certain cancers, benign growths, and neurodevelopmental conditions. When the gene is mutated at birth, it causes a patient to be at high risk of developing multiple types of cancer, autism, or multiple types of developmental delays.

Headquarters:  Huntsville, Alabama

How did you become involved in rare disease:  I was diagnosed with thyroid cancer in 2009. This, coupled with breast health issues and a feeling of unease, set me on a diagnostic journey. After a struggle to get a diagnosis, I was finally diagnosed with a PTEN mutation in 2011.

Previous career: I was in large business sales for BellSouth (now AT&T) and a medical office manager

Education: Bachelor’s degree in business administration from Mississippi State; Master’s degree in Management of Technology from the University of Alabama in Huntsville

The Organization
Organization’s mandate:  Find a treatment for PHTS and move toward access for all of our families.

Organization’s strategy: We work to find treatments through education, awareness, and a relentless pursuit to connect patients to each other and to researchers who show vigor behind their work.

Funding strategy: We pursue grants, fundraisers, crowdfunding, and individual donors. Long term, we will focus on mutual collaborations dedicated to a focus on patients.

What’s changing at your organization in the next year: We have added additional board members with a wealth of knowledge, vested interest in treatments, and dedication to our patients. We are currently launching a patient-driven registry to bring the community together, safely share data, and support research efforts.

Management Style
Management philosophy: Boldly pursue treatments keeping our patients and their families at the center of all we do.

Guiding principles for running an effective organization: I believe there are four pillars to success:

1. Focus on the mission and never deviating from that.
2. Collaborate with those who share your mission.
3. Lean on your resources: Board members, researchers, fellow advocates.
4. Focus on best practices: compliance, financials, transparency

Best way to keep your organization relevant:  The best way to stay relevant is through patient engagement and support.

Why people like working with you: I listen, and I make my time their time.

Mentor:  My mentors include many other rare advocates and my CFO.

On the Job
What inspires you: Our families and every patient I encounter inspires me. I also stand amazed at all the advocates on the rare disease ship with us. In my mind they are all rock stars.

What makes you hopeful: An effective treatment for our families with little to no side effects, and a genetic cure.

Best organization decision: To take the leap and start the foundation for our families.

Hardest lesson learned: There are politics in everything. I would say every advocate in our space starts with a simple desire to do good. Then, we dive in and learn there are many twists and turns to achieve that goal. My advice is to tune out the noise, negativity, and drama. Keep your patient-first philosophy and be kind to everyone.

Toughest organization decision: The toughest decision was to take the leap to start our foundation.

Biggest missed opportunity: Not giving it 110 percent of my attention from day one. I started part-time and worked, I then left my job four years later to give it everything I have.

Like best about the job: Talking to patients

Like least about the job: Busy work

Pet peeve: My pet peeve is negativity. All advocates have no time for that. There is no perfect answer. I believe communication is key. Work with everyone giving their best to the cause.

First choice for a new career:  I’d be a geneticist. I love science.

Personal Taste
Most influential book: Great Expectations by Charles Dickens. It reminds you of the basic values that matter— loyalty and having a conscience. I love all romance and mystery books as well. I guess you could call me a romantic with a sense of adventure.

Favorite movie: I like all movies. Two that come to mind are The Blind Side and Remember the Titans. Both are focused on throwing out stereotypes and overcoming as a community. I also love sports where the underdog proves everyone wrong with tenacity and grit.

Favorite music: I am an indoor cycling teacher. I like classic rock, rap, Christian contemporary, and everything in between.

Favorite food: Mexican and sushi

Guilty pleasure: Chocolate chip cookies

Favorite way to spend free time: Riding my bike, exercising, or just being with family and friends.

January 24, 2019