The happiest day of my life should have been the day I got married or the birth of my son. But for me, it was June 12, 2012 the day I was diagnosed with Cushing’s Disease, a rare and mostly undiagnosed endocrine disorder that ravages the body causing severe and often irreversible damage.
After more than two years of symptoms that didn’t seem connected (including four bouts of bronchitis, pneumonia, strep, shingles, a fractured hip, a “hump” on my back between my shoulder blades, a mysterious umbilical hernia and foot problem as well unexplained weight gain of over 70 pounds in less than 15 months), I finally had an answer to what was causing my body to go into a downward spiral. I had seen 10 different specialists and had hundreds of tests. Now even though the diagnosis was devastating, at least we had a name for it.
Cushing’s Disease is designated as a rare disease affecting 10 to 15 people per million each year, most commonly adults between 20 and 50 years of age. Women account for more than 70 percent of cases. Because the population of patients is so small, there is an incredible lack of information and awareness among medical professionals and very few quality materials available for patients and their family and friends.
Marie Conley is a consultant focusing on senior level engagement and stakeholder strategies for a variety of clients through her company Conley Consulting, LLC. Marie does big things by making the little things count. Her engagement strategies have strengthened reputations, boards, volunteer committees and donor bases. Her events are designed and executed to create memorable impressions, but also focused on creating a ripple effect to produce long-term loyalties and support.
During her tenure in politics (1994-2009), Marie was a trusted advisor to top-level government officials and private sector organizations beginning in 1994 as the scheduler to Governor Tom Ridge. In 2009, as a senior level fundraiser, strategist and event planner, she made a successful transition from Pennsylvania’s highly competitive political landscape into the equally challenging field of non-profit development as director of Penn State Hershey’s Children’s Miracle Network. In 2012, her focus was working with Sue Paterno, wife the late Coach Joe Paterno, to assist with many initiatives around the issue of prevention and awareness of child sexual victimization focused in the arena of higher education. This culminated in the creation of a Circle of Safety for Higher Education™, a campus-wide, multidisciplinary team approach based on bystander mobilization.
Marie never takes any professional or personal task at face value. She is always looking for ways to improve efficiencies, outcomes and most importantly calls upon herself and those around her to do the right thing for the right reasons. Her accomplishments in such a short period of time at Children’s Miracle Network are only one example.
Marie was unanimously granted Governor Emerita status by the Pennsylvania State System of Higher Education for her more than 13 years of service. Until she submitted her resignation in May 2016, Marie served as the Vice Chairman for the Board of Governor member of the Pennsylvania State System of Higher Education and was Chair of the Academic and Student Affairs Committee. She spearheaded significant changes in policy regarding the recruitment and hiring practices for university presidential and chancellor searches and has re-evaluated and changed the policy for university presidential evaluations. Marie was first nominated in 2002 and was re-appointed by Governor Ed Rendell in 2004 and re-appointed by Governor Tom Corbett in 2012. From 1997 to 2011, Marie served as a Council of Trustee for her alma mater, Bloomsburg University of Pennsylvania. She played a critical role on the Board of Lincoln’s Footsteps commemorating the 150th anniversary of the Lincoln’s Gettysburg Address. She continues to be a guest speaker and panelist on development and stakeholder engagement for a political and non-profit organizations.
But today Marie is facing her toughest battle yet. In 2012, Marie was diagnosed with Cushing’s Disease – a disease so rare it affects less than ten people per million each year. She has fought through dozens of hospital stays and numerous surgeries – including brain surgery – and still struggles daily to run her successful consulting business and a household that includes a husband and young son.
There’s a reason former Pennsylvania Governor Tom Ridge calls Marie “one of the most indefatigable people I’ve ever known.” Because while Marie drew the short straw in being one of those ten-in-a-million with Cushing’s, she has chosen not to simply live with the disease, but to use her skills honed in political campaigns to raise awareness and to fund critical research that will help those around the world who are living with this insidious disease. Already, The Conley Cushing’s Disease Fund has raised tens of thousands of dollars to fund research, to educate doctors on the signs of Cushing’s and to support her new book, A Cushing’s Collection.
Marie is not defined by Cushing’s. She is inspired by it to help others – and to leave a legacy of hope.
Marie hails from Bucks County, Pennsylvania; she lives in Elizabethtown, Pennsylvania with her husband, Chris Lammando, and their son, Carter.
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