{"id":11827,"date":"2013-11-15T07:46:36","date_gmt":"2013-11-15T15:46:36","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11827"},"modified":"2025-12-30T07:47:49","modified_gmt":"2025-12-30T15:47:49","slug":"champion-young-people-diane-bades-story","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/champion-young-people-diane-bades-story\/","title":{"rendered":"A Champion for Young People: Diane Bade’s Story"},"content":{"rendered":"
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Diane Bade\u2019s three children \u2014 Scott, Nicholas, and Christine — have myotonic dystrophy, as did her husband, Chris Bade, who passed away in 2005. Though not affected herself, Diane, like many parents and spouses, works tirelessly to educate herself, her family and her community.<\/div>\n<\/div>\n
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\u201cMy family had been misdiagnosed for 18 years, and we really wanted to know why we were different,\u201d Diane says. \u00a0\u201cFinally, in 1993, we received the correct diagnosis. There were so many questions and feelings of isolation.\u201d In 1998, the very first disease-specific support group gathering was held for people with DM.<\/p>\n

\u201cOnce we began to meet other similar families, it was like a family reunion,\u201d Diane adds. \u201cThere were so many commonalities. Then the IDMC (International Myotonic Dystrophy Consortium) invited families to their 2005 conference, which, until then consisted only of research-based folks. Out of that conference, Myotonic was born.\u201d<\/p>\n

Diane and her family have been very active on DM issues, starting the first annual camp for young adults called Camp Bade. This sleepover camp at the Bade home allows young people to come together from all over the country to talk, have fun and support each other.<\/p>\n

For Diane, the sense of joy and satisfaction that attendees experience among their peers motivates her to continue the experience. When Chris\u2019 father, Milton, passed away, his family set up a foundation that supports medical research and assistance to people in the DM community, allowing more young adults to attend Camp Bade. The foundation also contributes funds for the Young Ambassadors program which helps send young people to the Myotonic Annual Conference.<\/p>\n

Diane says that when she sees young people together\u2014teens and early adults\u2014she notices a growing bond. \u201cAs a mother, it\u2019s rewarding to see these young people accepting one another and laughing and enjoying themselves because that doesn\u2019t happen in \u2018normal\u2019 circumstances,\u201d Diane explains.<\/p>\n

\u201cThe Young Ambassadors attend the Myotonic Annual Conference to learn more about themselves. They talk about personal issues \u2013 questions they have that they can\u2019t talk about with their parents,\u201d Diane says. \u201cIn this context, they\u2019re able to talk about these things and get support and answers from their friends and peers. The more knowledge we equip them with, the more we empower them to manage their own disease.\u201d<\/p>\n

Diane adds that, \u201cIt was such a joy to hear so much laughter in my house that first time I hosted Camp Bade. My kids are quiet much of the time.\u00a0 They watch life happen a lot \u2013they are engaged with TV\u2014but they don\u2019t participate much,\u201d she says. \u201cBut when they meet their peers and their friends, they\u2019re engaged like children, laughing and experiencing joy. With this disease it\u2019s easy to fade into the sidelines. They don\u2019t say anything and many times just accept whatever comes their way. There isn\u2019t that drive to reach out. But when they get together, they feed that enthusiasm within each other.<\/p>\n

\u201cMy children live vicariously through others,\u201d Diane continues. \u201cTheir social networks and outlets are limited by their circumstances. They\u2019re okay with all that, which is the funny part. I\u2019m not okay with it, with them living through others. I want them to live life, but they are completely okay with watching life happen. At the same time, they are aware of the joy and experience of fun and laughter at Camp Bade. They love to have fun.\u201d<\/p>\n

Diane is eager to empower these young adults. They talk a lot about the resources that are available to them, such as medical information and clinical studies. They\u2019re also encouraged to get involved with registries and participate in longitudinal studies. Diane says she wants her kids to be a resource and participate so the next generation can benefit.<\/p>\n

\u201cMy kids don\u2019t have a lot of goals,\u201d explains Diane, \u201cBut I do want them to help break the cycle of having babies with congenital DM. And the best way to help children with low self esteem is to get them together and educate them. I like to see them helping one another, not defining who they are by the disease.<\/p>\n

\u201cIf I\u2019ve learned anything from my children, it\u2019s to respect people where they are, and not push my expectations on them. I want them to embrace the life they\u2019re given, and enjoy it.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11828,"template":"","class_list":["post-11827","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11827","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media\/11828"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11827"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}