Name: Andra Stratton
Title: President and co-founder
Organization: Lipodystrophy United
Disease focus: Lipodystrophy is a displacement and loss of fat in the body. Instead of storing fat in adipose tissue as it should, fat accumulates in the blood, organs, and muscle. This affects the function of multiple systems throughout the body. This also causes a drop in the hormone leptin, which play a critical role in keeping the use of energy in balance.
Headquarters: Los Lunas, New Mexico
How did you become involved in rare disease: I became involved about a year after my diagnosis at age 37. I quickly found there was almost no information to be easily discovered on lipodystrophy. Upon meeting other individuals with lipodystrophy, I recognized the great need to make information more accessible, and we decided to start the foundation.
Previous career: I was involved in senior level human resource and organizational development projects.
Education: Master’s degree in Industrial Organizational Psychology, and a B.A. in Psychology from California State University, Long Beach.
Organization’s mandate: To increase disease awareness and simultaneously help both physicians and patients have a better understanding of the disease.
Organization’s strategy: Our strategy is to unify all the stakeholders in the community. Also, to be the world’s experts in understanding the disease, from both the medical and psycho-social aspects, with the hope that holding this expertise will allow us to grow and move forward.
Funding strategy: We spent the first five years of the organization without any funding. I can’t say our funding strategy has been great. It’s been in progress. Now that we have a 501 (C)(3), it is to find opportunities that are a win-win with our stakeholders as well. Our community has a lot of financial problems from this illness because of their inability to work. We haven’t found that self-funding from our community has been very successful. We rely on grants.
What’s changing at your organization in the next year: We are in a big period of growth now that we are able to receive funding. We will be providing more tangible resources to the community— information they can hold and pass on to their physician.
Management philosophy: Stay flexible. Stay the course. I also believe the patient voice should have a seat at every table and every point of the process where the patient is involved. When I’m working with patients, my philosophy is to meet them where they are. We realize not everyone is well enough to do all of the things we need to do. We will allow them what they need to do to stay involved in the organization.
Guiding principles for running an effective organization: Always holding onto the importance of the patient voice and knowing the value of the patient voice and the patient perspective. The bottom line is the patient voice is most important, and holding to that with everyone we work with internally and externally.
Best way to keep your organization relevant: Collaboration with the rare disease community at large, and all lipodystrophy stakeholders, and continue with education in both disease and advocacy. I spend a lot of time going back to the basics, to the things taught by our umbrella organizations like Global Genes and NORD, and look at how we can continue to use those tools. Also, really understanding the medical aspects of the disease so that we are taken seriously.
Why people like working for you: I think people find inspiration from my comfort level with the disease. I have the disease and I am very comfortable living with it. I think that’s inspiring.
Mentor: I’d say my rare disease advocacy mentor is Jean Campbell, and my lipodystrophy mentor is Dr. Elif Oral because she never takes “no” for an answer. She listens and hears the burden of the disease from each patient, and she continues to fight daily for progress in lipodystrophy.
On the Job
What inspires you: I get inspired by baby steps in the community. I get inspired by someone who has never worn shorts out in public and gets the strength to do that. I get inspired when someone decides they need to take more responsibility to advocate for themselves with their physician.
What makes you hopeful: The idea that the patient voice will make a difference and will contribute to the progress in the understanding and treatment of lipodystrophy
Best organization decision: We’ve had some challenging times. With all the different subtypes, it’s been difficult to keep the community unified. The best decision was to do what it takes to collaborate and keep us all unified. It slowed us down as a foundation, but staying unified and working toward that has been our best decisions.
Hardest lesson learned: You can’t make everybody happy.
Toughest organization decision: To choose not to partner with potential funding partners because their goals were not in line with ours.
Biggest missed opportunity: Some early funding opportunities we missed because we didn’t have the ability in our organization to accept funding and we were not prepared to use it wisely.
Like best about the job: There’s never an end. My job is never done. It’s an abundant source of drive. There’s always more to do. No matter how much I want to stop, I can’t. I have to make the road smoother for those coming behind us.
Like least about the job: There are so many more unknowns in rare disease than knowns. There’s no easy answer to someone’s pain. I can’t solve this disease for people I love, and that makes me very sad.
Pet peeve: Part of my disease is that it can be considered visually appealing because it makes people look very athletic. When people learn about the disease, they say, “You are so lucky.” Not really. The fat is stored in our organs.
First choice for a new career: I’d love to be a food critic.
Most influential book: Motherless Daughters by Hope Edelman. I lost my mother when I was really young. I learned when I was very young to accept adversity and loss, and try to make the most of it.
Favorite movie: Girl with the Dragon Tattoo – I’m drawn to the character’s perseverance.
Favorite music: Mumford & Sons
Favorite food: Without leptin, we are constantly starving. My favorite food is all. All food all the time. I love it. I like talking about food. I like thinking about food.
Guilty pleasure: Potato chips
Favorite way to spend free time: I’ve really embraced resting and recharging. My body doesn’t work the same way as everyone else’s. Instead of feeling bad about resting, I look forward to that time. I can’t advocate if I’m not healthy.
December 14, 2017