Shannon Miller Lord

Shannon Miller Lord died in Atlanta on June 4, 2013 at the age of 66 after a fulfilling and productive life with many interests and talents. She was born in Norfolk, Virginia on June, 9, 1946. She was the daughter of the late Captain Harold Crenshaw Miller, USN and Marian Ross Miller and grew up in Virginia, Hawaii, Florida and Alabama. She graduated from Murphy High School in Mobile, Alabama in 1964. After attending Bennett College in Millbrook, New York she returned to Mobile and earned a Bachelor of Arts degree at the University of South Alabama in 1968. In 1970, Shannon moved to Atlanta where she was an English teacher at Wheeler High School. She then became an assistant curator at the Tullie Smith House at the Atlanta History Center. She married architect Larry Lord in 1971 and gave birth to their sons, Hunter in 1976 and Ashby in 1981. In addition to her devotion to her family, she was a self-taught artist and a writer. Shannon championed medical research, education and advocacy for persons with her family’s disease, myotonic dystrophy. Her signal moment came as she tried to explain the learning, attention and behavior problems experienced by her son Hunter. During this search, she discovered that she was seeking answers to the complexities of an autosomal dominant disease with many symptoms other than muscle weakness that affects thousands of people and their families world wide and is still commonly misunderstood and misdiagnosed. Shannon developed a deep relationship with members of the medical community around the world and she participated in medical conferences and regularly spoke at the biennial International Myotonic Dystrophy Consortium. As a result of these collaborations, she was inspired to begin the Myotonic Dystrophy Foundation in 2005 and served as the founding chairperson to educate the medical community, provide support for affected patients and families and fund research. Her curiosity reflected a gnawing desire to encourage scientists and physicians to learn from each other as well as patients and to understand the devastating, genetic disease. She often said she wanted “to learn how an English major could contribute to medical research.” With a strong voice, she offered her intellect and fierce determination to patients as their advocate and spokesperson who connected the symptoms and needs of patients to those doing the research. One researcher said Shannon Lord was “transformational in the direction research on myotonic dystrophy has taken.” Another said, “she has a remarkable capacity to entice, inspire, motivate and change the views of others in order to advance research in ways that we had not thought of.” As a member of the Muscular Dystrophy Coordinating Committee of the National Institutes of Health NIH, she participated in the assessment of the burden of muscle disease. She leaves behind an unpublished manuscript that describes her journey and is dedicated to all patients, family members and medical professionals affected by and working to conquer myotonic dystrophy. Shannon met life calmly with a peaceful, yet tenacious conscience as her family confronted and overcame the challenges of their lives. She often repeated the saying: “We make a living by what we get; we make a life by what we give.” She is survived by her husband Larry Lord and two sons, Hunter Thomson Lord and Jonathan Ashby Lord; all of Atlanta; brothers Harold Crenshaw “Pokey” Miller, Jr. of Daphne, Ala., David Miller of Mobile, Ala and William Ross “Bebo” Miller of Robbinsville, N.C.; one sister, Katie Miller Farnell of Fairhope, Ala. and many nieces and nephews. A visitation will be held on Sunday, June 9, 2013 from 4:00 – 6:00 pm at H.M. Patterson and Son, Arlington Chapel, 173 Allen Rd. NE, Sandy Springs, GA 30328. A memorial service will be held on Monday, June 10 at 10:00 am at St. Luke’s Episcopal Church, 435 Peachtree St. NE, Atlanta, GA 30308. In lieu of flowers, memorial gifts may be made to the Hunter Fund at the Myotonic Dystrophy Association, P.O. Box 29543, San Francisco, California 94129.