RARE Daily

Rare Leader: Marie Conley, Founder, The Conley Cushing’s Disease Foundation

September 19, 2019

The Basics 
Name: Marie Conley 

Title: Founder 

Organization: The Conley Cushing’s Disease Fund 

Social Media Links: 

Disease focus: Cushing’s is a rare condition that occurs when a person develops a tumor that drives the body (or adrenal glands) to make excessive amounts of the hormone cortisol. Cortisol is a hormone normally made by the adrenal glands and is necessary for life. Almost every cell contains receptors for cortisol and so cortisol can have lots of different actions depending on which sort of cells it is acting upon. These effects include controlling the body’s blood sugar levels, thus regulating metabolism, acting as an anti-inflammatory, influencing memory formation, controlling salt and water balance, influencing blood pressure and much more. It allows people to respond to stressful situations, such as illness, and has effects on almost all body tissues. 

Headquarters: Harrisburg, Pennsylvania 

How did you become involved in rare disease: In addition to the advocacy fund for Cushing’s, I am also a rare disease patient. After I contracted shingles, strep pneumonia, and then other unusual illnesses, like a fractured hip, I began to research independently and seek the help of specialists. Prior to this, I’d never had so much as a sprain, let alone complicated health concerns. This searching eventually led to a diagnosis after almost three years of questions and a growing list of symptoms. I remember trying to find an answer for all of my concerns and how frustrating it was. After transsphenoidal surgery, which is essentially brain surgery, I concluded that it was frustrating because there was very little information out there for patients of rare diseases. What compounded my frustration was that there was even less information for my family and friends to reference as I struggled to explain what was happening to me. Knowing how common these challenges are in the rare disease community, I decided to take my different skill sets and put them towards creating some type of support group for not only patients and their families around the area, but also to raise awareness for early diagnosis within the medical profession. 

Perhaps if there was more information available about this rare disease, patients might be diagnosed sooner. I decided to get this information out there.  

The Conley Cushing’s Fund was established to do just this, to create awareness for early diagnosis within the medical profession. The Fund has provided “Lunch and Learns” at Penn State Hershey Medical Center, Lehigh Valley Health Network and Penn Medicine at University of Pennsylvania Hospital. We have also created a support group for Cushing’s patients and their families.  

Previous career: I was involved in statewide political campaigns, and I was previously the director for the Children’s Miracle Network. I still do some communications projects, stakeholder engagement, event planning, and political consulting. 

Education: B.A. with a concentration in political science and communication from Bloomsburg University  

The Organization 
Organization’s mission: To support patients and their families with Cushing’s disease and to work with medical professionals and institutions for early diagnosis and research. 

Organization’s strategy: Our strategy has been to create collaborative relationships with hospitals. We focus on training medical students and professionals for early diagnosis for Cushing’s disease. We’ve trained more than 500 professionals in the past four years. 

Funding strategy: I host an annual fundraising and awareness reception every November called “Kicking Cushing’s to the Curb.” I’m blessed to have strong corporate sponsors, as well as purpose-driven individual donors. 

What’s changing at your organization in the next year: I’m always looking for other hospitals to collaborate with. We’re focused on Pennsylvania, which is where I live. I’m lucky enough that the partners I have are in the urban and more populous areas of PA, but I want to make sure we are also reaching the rural areas of our state. I was asked to be a part of the Pennsylvania Rare Disease Advisory Council. Our rare world is small and there is strength in numbers. If I can take my experience as a patient and do something greater, I find that to be rewarding.   

Management Style 
Management philosophy: I try to surround myself with people who are much smarter than me. Collaboration is an act of listening. Listening is key. I always believe a win is not mine; it is the entire team’s.  When it’s a loss, as a leader you need to own that.  

Guiding principles for running an effective organization: Knowing how to excel in a few impactful ways rather than trying to be all things to all people, which dilute your resources.  

Best way to keep your organization relevant: Not only is strong communication with patients and families key, but also with your organization’s sponsors and your donors. The general public may not understand much about your disease when you’re speaking with them for the first time, so storytelling is important. It’s reminding everyone that a rare disease is often non-discriminatory. I share that before I was diagnosed with Cushing’s, I was in excellent health. I ran half marathons and participated in sprint triathlons. I was professionally successful and able to run and play with my son. I ended up with a disease that has forever changed my life. It is something that I live with day-by-day, sometimes hour-by-hour, and unfortunately sometimes minute-by-minute.  

Why do people like working with you: As a patient and with my prior work experiences, I am able to advocate effectively for the things that matter. I believe in the value of setting realistic goals and always believing that there is hope. I am a proponent for laughter and believe that humor can help to level the playing field. 

Mentor: Governor of Pennsylvania and former Homeland Security Director Tom Ridge. He was my first boss. He would always take time to thank people when no one was looking and when the cameras were not on. He would spend time with people who wanted to talk to him. Because of that, and those experiences, he showed me how you could be an executive and always be kind. My parents also had a big influence on me. There’s no doubt that the values that they instilled in me provided me with the strength that I needed to take on Cushing’s head on and all of the different medical journeys, surgeries, and ER visits, and turn it into a call to action. 

On the Job 
What inspires you: The patients I have the honor of knowing are a huge inspiration. Cushing’s is a terrible disease that is often very isolating. To witness their courage, tenacity, and perseverance is humbling. My son also inspires me. He’s a constant reminder that this disease has life-altering consequences, and not just for me. The empathy, compassion, and the support that he has for me, but also his awareness of others and what they might be going through, is admirable. 

What makes you hopeful: Knowing there’s always tomorrow. Even if you have a bad day, we can move forward. From a research standpoint, the medical advances and the medications that are coming out for our community, as well as the entire rare space, gives me hope. 

Best organization decision: In the beginning, I floundered quite a bit because I didn’t know where I “lived.” After I attended a Global Genes conference a few years ago, I walked away with an understanding that I could have a niche were my Fund could be successful. That would evolve into the medical training for early diagnosis in the medical community like our “Eat, Enjoy and Diagnose” or our “Dinner and Diagnosis” trainings some of which are accredited classes for CME. 

Hardest lesson learned: For more than 16 years, I was a professional fundraiser for a variety of campaigns and the Penn State Hershey Children’s Hospital. I was successful. I was good at what I did. When it came time to ask for support for my Fund, I cried, and I stuttered when I spoke with potential donors. I was terrible. I needed to become comfortable becoming the subject of the ask. I had to remember that I wasn’t doing this for me, and that showing a level of vulnerability to my potential investors would only benefit the Cushing’s community more. I started becoming more comfortable being the subject of the ask versus all my professional years when I was asking on behalf of someone else.  I’m still trying.  

Toughest organization decision: Recognizing my limitations, not only due to funding, but also due to my own capabilities and time—given my health limitations, family, and career. I can’t do everything. I’m not a nonprofit with a staff. I’m grateful for my fiscal sponsor, TFEC.  I am the Fund. I need to just keep setting realistic goals and recognize that I can’t work on everything in research, or the medical community, because that’s not the space I am in.  

Biggest missed opportunity: Not being available to learn more from other organizations that are set up like I am. I wish I could participate in more, and larger, rare disease conferences and talks. Sometimes it’s just the timing, or, as a patient, sometimes it’s my fear to travel because, what if I get sick? What if something happens to me while I’m there? That’s a goal that I have for the future. 

Like best about the job: To me, it’s not a job. It’s who I am. 

Like least about the job: That there’s not more of me and that I don’t have more funds to support all the valuable initiatives this community needs. 

Pet peeve: My pet peeve is unkind people. As a Cushing’s patient, and as other rare disease patients also experience, as you start to look healthier, people assume you are better or you’re just being a hypochondriac.  You are still sick, and you are still challenged everyday with different decisions with how to live with your illness. You want people to have patience. If you are not moving fast enough, it’s because your joints really hurt. If your words are not as articulate as you would like, it’s not because you are not comprehending, it is because a cognitive “fuzziness” is a real side effect. That’s a pet peeve that has escalated over the last couple of years. 

First choice for a new career:  A billionaire so I could open pituitary centers across the country.   

Personal Taste 
Most influential bookA New Earth: Awakening to Your Life’s Purpose by Eckhart Tolle and Lean In: Women, Work, and the Will to Lead by Sheryl Sandberg  

Favorite movie: Field of Dreams and Overboard (the original one) 

Favorite musicU2 and any late 80’s and early 90’s dance music 

Favorite food: Nachos 

Guilty pleasure: Nachos 

Favorite way to spend free time: Being with my family 

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