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From:
Herwig Lange
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Saturday, January 14, 2023
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Christiane was exceptional in caring for her own HD-family and the HD-family worldwide. It was a privilege to help and support her. R.I.P. Dr.med. Herwig Lange
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From:
Julie Porter
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Monday, January 9, 2023
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Written by Alice and Nancy Wexler, sent by the Hereditary Disease Foundation:
Our great friend and courageous HD advocate and pioneering organizer Christiane Lohkamp has died in Stuttgart, Germany, December 31, 2022, of complications of Parkinson's disease.
Christiane met the challenges of Huntington's disease head-on, when first her husband, and then each of her two children, in their twenties, were diagnosed with HD. Her daughter Anne lived in Los Angeles, where she was preparing to study architecture, following in the footsteps of her parents and grandfather, a pursuit she soon was compelled to abandon on account of the disease. Christiane visited LA as often as she could, offering comfort and support to her daughter, and then to a little granddaughter Joanne, born around 2009.
We met Christiane during one of these visits and subsequently got to know her at the international Huntington's meetings we all attended. While Christiane came to only a few Hereditary Disease Foundation events, her daughter Anne and her husband Marshall came to a number of Foundation Workshops to talk to the workshop attendees, many of whom were young basic scientists who had never seen a person with Huntington's. Anne helped them understand the physical and the psychological challenges of the disease, while Marshall also offered his perspective as a loved one and, eventually, fulltime caregiver to his wife and daughter.
One of the highlights of my friendship with Christiane was a wonderful St. Vitus' pilgrimage we made for a week in the summer of 2010. St. Vitus was the patron saint of nervous disorders. We visited all the churches and museums in southern Germany which had altars, paintings and sculptures of St. Vitus, including the lovely chapel of St. Vitus in Stuttgart. Christiane had mapped out a detailed itinerary and did all the driving, an unforgettable gift.
Christiane faced the multiple losses of Huntington's with courage, resilience, generosity, and grit. While suffering her own personal grief, she dedicated much of her life to building HD associations not only in Germany but throughout Europe to help advance Huntington's treatment and make better lives for all of us. We will miss her greatly.
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