Marie’s nominator said:
“Marie is the leader of a support group for patients with Cushing’s. But she isn’t just that, she is so much more. Not only does she bring together, support, and truly care about people with Cushing’s, but she is a strong advocate for those with the disease. She is the founder of the Conley Cushing’s fund, too!”
This is what Marie told us:
What’s your story? Why did you start doing what you’re doing, how long have you been doing it? Why you got involved?
My journey began in 2012 when I was diagnosed with Cushing’s after three years of misdiagnoses and consultations with multiple specialists. Following a failed brain surgery, I underwent a bilateral adrenalectomy. Two years later, I had the lower right lobe of my lung removed due to a suspected ACTH-producing tumor. Additionally, I faced PMDD caused by a pituitary imbalance, leading to a total abdominal hysterectomy with bilateral salpingo-oophorectomy. Like most Cushing’s patients, I still continue to have daily challenges, but I will not allow this disease to define me.
In the early months after my adrenalectomy, I felt a strong need to help families understand this challenging disease, as my own family—my husband, parents, and six-year-old son—struggled to cope. I also wanted to assist medical professionals in recognizing and diagnosing Cushing’s disease earlier.
In July 2014, I founded The Conley Cushing’s Disease Fund to support patients and their families. Our mission includes creating awareness and providing advocacy training by collaborating with medical professionals, hospitals, and organizations. We aim to equip medical professionals to identify Cushing’s disease more swiftly and manage its symptoms with empathy.
Today, our support group spans six states with 75 members. We are proud to celebrate the 10th anniversary of our Kickin’ Cushing’s to the Curb awareness and fundraising event and have trained over 1,700 individuals in early diagnosis. In 2017, I advocated for creating the PA Rare Disease Advisory Council and served as its co-chair. I also serve on the Cushing’s Support and Research Foundation board.
My journey is driven by a passion for improving the lives of those affected by Cushing’s and fostering early and accurate diagnosis within the medical community.
What would you like to see happen in The Pituitary Foundation for next 30 years?
Your organization is an invaluable resource for patients with pituitary disorders, and your outreach and support are remarkable. In the next 30 years, I would love to see more materials specifically designed to support family members. Families often struggle to understand the complexities of these diseases, and they may lack the knowledge and language to provide the empathy and support their loved ones need. By offering more educational resources and guidance for family members, we can help them become better equipped to navigate these challenges together.