{"id":13526,"date":"2021-12-10T11:33:48","date_gmt":"2021-12-10T19:33:48","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?p=13526"},"modified":"2026-01-01T11:34:47","modified_gmt":"2026-01-01T19:34:47","slug":"celebrating-life-hunter-lord","status":"publish","type":"post","link":"https:\/\/myotonic.org\/de\/celebrating-life-hunter-lord\/","title":{"rendered":"Celebrating the Life of Hunter Lord"},"content":{"rendered":"
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When Hunter Lord passed away at the age of 45 on Sunday, December 5, 2021, he left a permanent mark not only on the hearts of all who knew him personally, but on the Myotonic Dystrophy Foundation itself and the entire community that it supports. Indeed, Hunter was among the founders<\/a>, leaders, pioneers, and inspirations who helped to create the Foundation and continued to support its work throughout his life. Hunter\u2019s legacy of hard work, commitment to the cause, and cheer will live on in our work even as we grieve his loss.<\/div>\n<\/div>\n
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MDF community members are welcomed and encouraged to share remembrances of Hunter by emailing\u00a0info@myotonic.org<\/a>\u00a0which will be conveyed to the\u00a0Lord Family<\/a>\u00a0or to make a\u00a0memorial contribution to the Hunter Fund at MDF<\/a>\u00a0or\u00a0Camp Twin Lakes<\/a>\u00a0in accordance with Hunter\u2019s wishes. Enjoy the photo memorials and other remembrances of Hunter below, and join us in conveying our deepest sympathies to Hunter\u2019s family.<\/p>\n

Click here to read Hunter Lord’s obituary and find more details on his service to be held on Saturday, December 11, 2021.<\/a><\/p>\n

Our Friends & Family Reflect on Hunter Lord<\/h2>\n
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„Hunter Lord was a truly inspiring human being. Not only was Hunter, along with his brother\u00a0Ashby,\u00a0Shannon Lord’s motivation for getting MDF off the ground in order to change the future of myotonic dystrophy but a kind and gentle soul. Throughout his life, Hunter\u00a0connected with\u00a0clinicians and researchers from around the world to help them\u00a0stay engaged with DM and fight harder to discover\u00a0treatments, a cure, and ways to improve quality of life.\u00a0MDF honors Hunter’s life and legacy of making a difference.<\/p>\n

In spite of the significant impact on his body, Hunter did not allow DM\u00a0to impact his life whenever possible and fought to find ways it keep it from limiting him.\u00a0He was a joy to be around, his spirit radiating kindness and generosity.\u00a0Hunter and the Lord family have undoubtedly helped advance both care and cure\u00a0for which we\u00a0will be forever grateful. Without Hunter, MDF would not be the same; his memory will continue to help keep us going strong.<\/p>\n

We have all learned from Hunter and our hearts have grown bigger and more hopeful because of him.\u00a0All of us at\u00a0MDF\u00a0send our love and strength to Larry and Peggy and will ensure\u00a0Hunter\u2019s legacy will live on.“<\/p>\n

The MDF Board of Directors, Scientific Advisory Committee, and Staff.<\/p>\n<\/div>\n<\/div>\n

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„Hunter was an inspiration, like many other myotonic dystrophy patients and family members challenged by this disease. Hunter’s persistent work as a record keeper, his love of sports (especially Atlanta Braves baseball), and his caring goodness toward others exemplified the qualities of empowerment over myotonic dystrophy that his mother, Shannon, taught us. Hunter was and is so much more than myotonic dystrophy! Hunter will be missed. But, his inspiration will always be with us.“<\/p>\n

Richard T. Moxley, III, MD
\nEmeritus Member of the MDF Scientific Advisory Committee<\/p>\n<\/div>\n

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„Good memories from Paris. Nice smiles to remember.“<\/p>\n

Genevieve Gourdon, PhD & Mario Gomes-Pereira, PhD
\nInstitut de Myologie<\/p>\n<\/div>\n

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„I have known Hunter and his family for many years. I was thinking about the early days that started in Philadelphia where we met for the first time. There are so many memories. His shy but kind smile never changed from day one. He was receiving lots of love from his family. One remarkable thing about Hunter was that he lived his life as fully as he could. The disease did not stop him. He was always very kind to me. We talked about his favorite team, Atlanta Braves. While watching the World Series this year, I could not help but imagining his joy of his team becoming the champion. He knew what DM1 was doing to his health but calmly lived with it. He never showed anger towards the disease or me even when we were talking about many bad things that this disease could do to him. Of course, I do not know what emotional challenge he went through deep in his mind. I respected him as an individual who took his challenging situations and enjoyed the love you and your family gave him.“<\/p>\n

Tetsuo Ashizawa, MD
\nMDF Scientific Advisory Committee<\/p>\n<\/div>\n

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„Hunter was always ready with a smile and a sports statistic or anecdote especially when it came to talking about his beloved Atlanta Braves. He loved his jobs helping other people either in his Dad\u2019s office or at the Camp Twin Lakes headquarters and he loved selling his Mom\u2019s memoir. He never complained about the burden of living with the dreadful complications of Myotonic Dystrophy. He will be greatly missed.“<\/p>\n

Marlo and Glen Wiggans
\nFamily Friends & MDF Community Members<\/p>\n<\/div>\n

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„Hunter continues to inspire work in our laboratories at the University of Rochester. We are deeply grateful for the Lord Family’s contribution to myotonic dystrophy.“<\/p>\n

Charles Thornton, MD, Johanna Hamel, MD, John Lueck, PhD, Sam Mackenzie, MD, PhD, and teams.
\nUniversity of Rochester<\/p>\n<\/div>\n

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„I first met Hunter at a myotonic dystrophy foundation family conference. At the time it was abundantly clear that he was there to cheer on and support the researchers working to identify treatments for this debilitating condition. Over time I continued to be impressed by his attitude and participation as a patient advocate on an international level. I know he, and his family, provided personal inspiration to continue to work toward treatments. I am sure that Hunter will continue to champion the cause in spirit, though he will be missed in person.“<\/p>\n

Nicholas Johnson, MD
\nVirginia Commonwealth University<\/p>\n<\/div>\n

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Learn more about Hunter and the Lord Family in their book, „Family Roots: A Mother’s Search for Meaning“.<\/a><\/p>\n<\/div>\n

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Hunter with a full beard and long hair during the COVID-19 pandemic.<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

When Hunter Lord passed away at the age of 45 on Sunday, December 5, 2021, he left a permanent mark not only on the hearts of all who knew him personally, but on the Myotonic Dystrophy Foundation itself and the entire community that it supports. Indeed, Hunter was among the founders, leaders, pioneers, and inspirations […]<\/p>\n","protected":false},"author":9,"featured_media":13536,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[70],"tags":[],"class_list":["post-13526","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts\/13526","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/users\/9"}],"replies":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/comments?post=13526"}],"version-history":[{"count":0,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts\/13526\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media\/13536"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media?parent=13526"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/categories?post=13526"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/tags?post=13526"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}