Aug. 12, 2014

In Memory of Marilyn Sousa

A statement by Sandra C. Raymond, President & CEO of the Lupus Foundation of America

We are saddened to learn of the passing of one of the Foundation’s original founders, and our dear friend, Marilyn Sousa of West Hartford, Connecticut.   Marilyn and her late husband Gordon were instrumental in helping to establish the Lupus Foundation of America in 1977.  On behalf of all people with lupus, I wish to express my sincere appreciation for all of the dedicated efforts that Marilyn provided to the Foundation.   She was active with the Foundation from the time of its founding, and remained continuously involved with the organization almost until her passing. 

Marilyn served for many years as a member of the Foundation’s National Board of Directors, including in a number of officer positions.  She also served as the chair and as a member of the Patient Education, she chaired the Awards committee, and she served for many years as a member of the Lupus Now® magazine advisory board.  Most recently, Marilyn served as an advisor to the Board’s Network Development Committee. 

However, Marilyn is best remembered for her work with the International Associated Groups Program, where she helped to organize other lupus groups around the world.   In 2001, Lupus Canada presented Marilyn with the "Volunteer Recognition Award" for her assistance in helping to establish that organization in 1986.

Marilyn also was the Founder and the first President of the Lupus Foundation of America, Connecticut Chapter, where she continued to serve as an advisor and lifetime Executive Board Member.  She was chair and liaison for the chapter's Medical Advisory Council and was an active member of the chapter’s Program/Seminar Planning Committee.

In recognition for her many years of dedicated service to the Foundation, the Lupus Foundation of America also bestowed its highest honor by presenting Marilyn with the Foundation’s Lifetime Achievement Award and the Summa Award.  In addition, the Foundation’s Board of Directors appointed Marilyn to be one of only two Lifetime Honorary Members of the Board.  She continued to attend Board meetings as long as she physically was capable, and then she continued to participate by telephone.  She always provided a wealth of information and helpful insight to the Board, gained through her own personal experiences of living with lupus and her decades of service to people around the world who are affected by the disease.  I am personally going to miss her participation and, most of all, her advice, counsel and advocacy on behalf of our constituents. 

In addition to her service to the field of lupus, Marilyn also was honored for her civic and volunteer efforts.  She received 16 national awards, including being named as a national finalist for the prestigious Jefferson Leadership Award.  She also received the "Women Who Dare to Make a Difference" Award from the Council of Jewish Women, and the Leadership Council Award.   She also was recognized for her leadership in community medicine for her educational contributions, including the chronic illness adherence and lupus awareness programs. 

Marilyn was loved and respected by people around the world who knew her.  She attended medical and lay conferences both in the United States and in other countries, always working to bring greater awareness and support to the fight to end lupus.  Throughout her travels, Marilyn served as an ambassador for the Lupus Foundation of America, offering encouragement, guidance and, most importantly, hope to people around the world that a victory over lupus was within sight. 

On behalf of the Lupus Foundation of America Board of Directors, staff, volunteers, and the entire field, I wish to extend condolences to Marilyn’s family and express our collective appreciation for her many years of devotion and passion to fighting lupus and helping those who suffer from this misunderstood and unpredictable disease.  

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