By Spondylitis Association of America
Thursday, January 03, 2019
It is with heavy hearts and great sadness that we share the news of the passing of our dear friend, SAA’s former Executive Director, Laurie M. Savage, M.S. FLE. Laurie passed away on Sunday, December 30, 2018, surrounded by her loving family, after her three-year-long battle with cancer. She fought cancer like she did everything else - with optimism and fearlessness - and a determination to not allow it to interfere with her life and passions.
Laurie dedicated 21 years to the Spondylitis Association of America, having joined in 1996 as our Programs Director and Editor-In-Chief of SAA’s magazine, Spondylitis Plus. In 2007, she was asked to lead the organization as its Executive Director, a role she was proud to accept.
Under Laurie’s leadership, SAA continued to reach new heights, keeping its sights on advancing spondyloarthritis research through funding innovative projects and research initiatives, as well as forging crucial connections and relationships with and among leading spondyloarthritis experts. The needs of the spondyloarthritis community she served were always the guiding principles of any decision. She used to say that she was only here to listen to and take heed from those really in charge – the community she served – to amplify their voices, and meet their needs. She instilled these principles and values in her staff and volunteers, creating a culture of authenticity, teamwork and support, all led by the mission of supporting and nurturing our community.
Laurie was diagnosed with breast and bone cancer in 2015, and though her initial prognosis was less than hopeful, she made it clear she was going to fight hard and do it her way. And she did. Her doctors referred to her as a “Super Responder” to treatment, surpassing all expectations and spending her remaining time leading a full and productive life. Laurie retired from her beloved SAA in 2017, though remained close by and involved as a research consultant.
Laurie’s impact on the spondyloarthritis landscape is vast, and will be long lived. She is co-author of multiple peer-reviewed journal articles and white papers, including an article in the October 2007 issue of Nature Genetics, which announced two new genes identified in the genetic susceptibility toward ankylosing spondylitis. From 2005 to 2010 she served as co-principle investigator for the administrative core of the NIH funded, multimillion dollar “TASC” genetic study in spondyloarthritis, and in that capacity was responsible for the oversight of one of the multi-center national patient recruitment and enrollment centers under the auspices of the University of Texas in Houston. In 2016 she co-authored, along with the former president of the Ankylosing Spondylitis International Federation, a chapter in Oxford University Press’ Oxford Textbook of Axial Spondyloarthritis, titled, “Patient support and advocacy in Axial Spondyloarthritis.”
Laurie served as co-chair on the Steering Committee of the NIH’s National Institute of Musculoskeletal and Skin Diseases Coalition in Bethesda, MD; served on the Advisory Board of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), at Stanford University, CA; as well as on the Board of Directors of the Angels for Hope Neuroblastoma Research Foundation, at Memorial Sloan-Kettering Hospital in NYC.
She held undergraduate and graduate teaching credentials in French language and literature from the Catholic University in Paris, and earned graduate diplomas in leadership, management, finance, and strategic marketing from Tulane University's A. B. Freeman School of Business. A pilot’s license was among her more unique accomplishments.
Those who knew Laurie, both personally and professionally, will remember her warmth, her caring nature, passion for life, and her sense of humor.
The number of lives Laurie touched and improved through her work is incalculable. The loss to the spondyloarthritis community is huge; and the loss to her family, many friends, colleagues, and the SAA family is immeasurable.
Today we remember the life and countless achievements of a creative, fierce, talented, kind and gracious visionary, and offer our deepest condolences to the many who loved her.
Laurie is survived by her devoted sons: Christopher, Matthew, and Patrick Kolbenschlag, her daughters-in law: Amanda and Christina, and her young granddaughters: Madeline and Danielle. Our thoughts are with her family and friends.
Laurie’s rich legacy will live on in the mission of SAA, in the work we carry on, and in the hearts of everyone who had the immense pleasure of knowing her. To know her was to love her, and she is deeply missed.
When Laurie stepped down from her roles as Executive Director of SAA, the staff presented her this video to honor and acknowledge her impact.
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