{"id":7590,"date":"2022-03-14T15:08:13","date_gmt":"2022-03-14T15:08:13","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=7590"},"modified":"2024-08-29T16:13:45","modified_gmt":"2024-08-29T20:13:45","slug":"huldas-dancing-for-duchenne-can-bring-joy-and-happiness","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/huldas-dancing-for-duchenne-can-bring-joy-and-happiness\/","title":{"rendered":"Dancing for Duchenne Brings Joy to the Community"},"content":{"rendered":"\n<figure class=\"wp-block-image alignleft\"><img decoding=\"async\" src=\"https:\/\/admin.ptcbio.com\/en\/wp-content\/uploads\/sites\/3\/2022\/03\/Hulda-Aegir-300x169.jpg\" alt=\"Hulda and Aegir\" class=\"wp-image-7591\"\/><\/figure>\n\n\n\n<p class=\"core-block core-paragraph\">Hulda Svansd\u00f3ttir is a mother of three, caregiver and Duchenne advocate from Iceland. Hulda\u2019s life was transformed when her youngest son, \u00c6gir, was diagnosed with Duchenne when he was four and a half years old. However, despite knowing little about the disease, when Hulda found out her son may be eligible for treatment, she was filled with purpose and knew immediately her role in life was to raise awareness of Duchenne. From that day Hulda decided not to let grief, sadness or fear about her son\u2019s diagnosis define her or her families lives and instead set out to create a community that would spread messages of joy and hope, in Hulda\u2019s own words \u201cwe need more positivity and compassion in the world\u201d.<\/p>\n\n\n\n<figure class=\"wp-block-image alignright\"><img decoding=\"async\" src=\"https:\/\/admin.ptcbio.com\/en\/wp-content\/uploads\/sites\/3\/2022\/03\/aegir-300x169.jpg\" alt=\"Aegir\" class=\"wp-image-7597\"\/><\/figure>\n\n\n\n<p class=\"core-block core-paragraph\">Due to the size of Iceland (a population of just over 360,000), Hulda found that there were not many others from the Duchenne community in Iceland to connect with and share important information and experiences. However, she found that there was great support from groups outside of Iceland. To start these connections, Hulda sought to build her own online presence and fill the gap. As a creative thinker, Hulda had so many ideas, but started by creating \u2018Hope with Hulda.\u2019 A charity built on supporting causes related to Duchenne and rare diseases. She also started social media account which is all about spreading hope, joy, and love through poetry. As an avid poet, Hulda found a way through writing poetry to deal with her own feelings of grief and address emotions from her son\u2019s diagnosis. She is working on selling her poems online through her website hopewithhulda.com and is using the profits to support Duchenne research and rare disease families in Iceland.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Hulda\u2019s positive nature, big personality and \u2018just have fun attitude\u2019 was combined with her and her sons love to just get up and dance in their living room. One day Hulda decided to record this and share it via her social channels. It went from a one-off to a regular occurrence called \u2018Friday fun \u2013 Dancing for Duchenne\u2019 and the response was unimaginably positive, so she decided this would be a good way to spread positivity and raise awareness in a fun way and thus \u201cDancing for Duchenne\u201d was born!<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Hulda and \u00c6gir gradually started sharing videos every Friday and bringing in friends, family, and members of their community with the local fire department even requesting to take part! As Dancing for Duchenne grew on social media, more and more Icelandic celebrities took part and most notably Prime Minister Katr\u00edn Jakobsd\u00f3tti got her groove on for Duchenne. As a result of this project, Hulda says, \u201cthere are probably not that many people in Iceland who don\u2019t know about Duchenne by now\u201d and after watching her videos many people have contacted her to ask about Duchenne and how they can help. The success of Dancing for Duchenne is a testament to Hulda\u2019s infectious positivity even through hard times.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">In Hulda\u2019s words \u201cDancing is something that brings everyone together, you can\u2019t not smile or laugh whilst you are dancing. It allows you to feel better even if only for a little while or if you are having a bad day\u201d.<\/p>\n\n\n\n<figure class=\"wp-block-image alignleft\"><img decoding=\"async\" src=\"https:\/\/admin.ptcbio.com\/en\/wp-content\/uploads\/sites\/3\/2022\/03\/HuldaAegir2-300x169.jpg\" alt=\"Hulda and Aegir\" class=\"wp-image-7599\"\/><\/figure>\n\n\n\n<p class=\"core-block core-paragraph\">But Hulda didn\u2019t stop there, she is always thinking of creative ideas and in addition to her Friday fun Dancing for Duchenne\u2019 posts, Hulda has been instrumental in creating better representation for children in the disabled community. Hulda worked to translate the book \u201cDuchenne and me\u201d into Icelandic and distributed it around local schools. This book has allowed her son \u00c6gir and other children with Duchenne be better understood by their peers. With an abundance of more ideas on the go, Hulda is also working on a documentary meeting and dancing with rare disease families from across Iceland. In addition, she has created a video showcasing the \u2018doll like me\u2019 project, which aims to produce dolls and toys representing children with disabilities, and she is even hoping to collaborate with Iceland\u2019s biggest TV production company about this! Hulda also has dreams of creating a book series around the project so that children can read books that showcase rare disease children.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Hulda\u2019s advice to those in the Duchenne community stems from the ethos behind Dancing for Duchenne.<\/p>\n\n\n\n<div  class=\"quote-block  color-theme--white\">\n\n\t\n\t<div class=\"quote-block__content\">\n\t\t<blockquote class=\"quote-block__text color-theme-border--white\">\n\t\t\t<div class=\"quote-block__heading heading--4\">\n\t\t\t\tDo the things that bring you joy. Try to enjoy the little things that make you happy, be in the moment\u201d, (whether that is dancing in your bedroom, reading, or writing poetry or just enjoying time with your family).\t\t\t<\/div>\n\t\t<\/blockquote>\n\n\t\t\n\t\t\t<\/div>\n\n<\/div>\n\n\n\n\n<p class=\"core-block core-paragraph\">We can\u2019t wait to catch up with Hulda again to learn more about her upcoming projects.<br>To connect with Hulda on social look for \u2018Dancing for Duchenne \u2013 Aegis journey\u2019 on Facebook.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Hulda created Dancing for Duchenne to encourage positivity through hard times.<\/p>\n","protected":false},"author":1,"featured_media":16112,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,60],"tags":[],"media-type":[5],"therapeutic-area":[21],"class_list":["post-7590","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community","category-rare-journeys"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.5 (Yoast SEO v27.5) - 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