{"id":456917,"date":"2025-10-06T16:35:42","date_gmt":"2025-10-06T15:35:42","guid":{"rendered":"https:\/\/southwarknews.co.uk\/?p=456917"},"modified":"2025-10-06T16:35:45","modified_gmt":"2025-10-06T15:35:45","slug":"uks-youngest-als-patient-takes-part-in-research-trial-at-kings-college-hospital","status":"publish","type":"post","link":"https:\/\/southwarknews.co.uk\/area\/camberwell\/uks-youngest-als-patient-takes-part-in-research-trial-at-kings-college-hospital\/","title":{"rendered":"UK&#8217;s youngest ALS patient takes part in research trial at King&#8217;s College Hospital"},"content":{"rendered":"\n<p class=\"has-medium-font-size\"><strong>A fourteen year old boy with ALS is taking part in a research trial at King&#8217;s College Hospital that may improve the chances for people who have the condition, <em>writes Rebecca Healy&#8230;<\/em><\/strong><\/p>\n\n\n\n<p>ALS &#8211; amyotrophic lateral sclerosis &#8211; is the most common type of Motor Neurone Disease. It leads to muscle weaknesses and gets worse over time. There is no cure for the disease but trials are taking place to gain a deeper understanding of the disease and potentially slow its growth.\u00a0<\/p><script type=\"text\/plain\" data-tcf=\"waiting-for-consent\" data-id=\"69959\" data-bid=\"1\" data-placement=\"448384\" data-no-track=\"impressions\">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<\/script>\n\n\n\n<p>Kyle Sieniawaski, from Pontypridd in Wales is believed to be the youngest person in the UK living with the disease. He is participating in the Fusion trial at King\u2019s MND Care and Research centre.<\/p>\n\n\n\n<p>The fusion trial is investigating whether a drug will help patients with a rare specific genetic form of ALS caused by mutations in a specific gene.&nbsp;<\/p><script type=\"text\/plain\" data-tcf=\"waiting-for-consent\" data-id=\"68153\" data-bid=\"1\" data-placement=\"448385\" data-no-track=\"impressions\">PGRpdiBpZD0ic291dGgtMjI1MDQ2MjI4IiBjbGFzcz0ic291dGgtY29udGVudCBzb3V0aC1lbnRpdHktcGxhY2VtZW50IiBzdHlsZT0ibWFyZ2luLWxlZnQ6IGF1dG87bWFyZ2luLXJpZ2h0OiBhdXRvO3RleHQtYWxpZ246IGNlbnRlcjsiPjwhLS0gIC8xNTQ3MjUwNzAsMjI2OTQxOTY5Njkvc291dGh3YXJrbmV3cy9zb3V0aHdhcmtuZXdzIC0tPg0KPGRpdiBpZD0iZGl2LWdwdC1hZC0yeDEiPg0KPHNjcmlwdD4NCmdvb2dsZXRhZy5jbWQucHVzaChmdW5jdGlvbigpIHsgZ29vZ2xldGFnLmRpc3BsYXkoJ2Rpdi1ncHQtYWQtMngxJyk7IH0pOw0KPC9zY3JpcHQ+DQo8L2Rpdj4gICAgICAgICAgPC9kaXY+<\/script>\n\n\n\n<p>Kyle\u2019s mother, Melanie Sieniawski, said: \u201cKyle was so happy to be given the chance to be part of this trial, and we\u2019re keeping everything crossed that it helps him, and hopefully others living with ALS. Research is our biggest hope for the future.\u201d<\/p>\n\n\n\n<p>King\u2019s MND Care and Research centre is the first specialist centre for MND. Dr James Bashford, honorary consultant neurologist at King\u2019s, said: \u201cWe are incredibly grateful to Kyle and all our research participants who are supporting our work.&nbsp;<\/p><script type=\"text\/plain\" data-tcf=\"waiting-for-consent\" data-id=\"71156\" data-bid=\"1\" data-placement=\"448386\" data-no-track=\"impressions\">PGRpdiBpZD0ic291dGgtMzg3MDQ5NTQ1NiIgY2xhc3M9InNvdXRoLWluLWFydGljbGUtbXB1OSBzb3V0aC1lbnRpdHktcGxhY2VtZW50Ij48IS0tICAvMTU0NzI1MDcwLDIyNjk0MTk2OTY5L3NvdXRod2Fya25ld3Mvc291dGh3YXJrbmV3cyAtLT4NCjxkaXYgaWQ9ImRpdi1ncHQtYWQtbXB1OSI+DQo8c2NyaXB0Pg0KZ29vZ2xldGFnLmNtZC5wdXNoKGZ1bmN0aW9uKCkgeyBnb29nbGV0YWcuZGlzcGxheSgnZGl2LWdwdC1hZC1tcHU5Jyk7IH0pOw0KPC9zY3JpcHQ+DQo8L2Rpdj4gICAgIDwvZGl2Pg==<\/script>\n\n\n\n<p>\u201cWe hope the results of this trial will lead us to an effective treatment for this devastating form of ALS, potentially helping people all over the world to manage their symptoms and maintain their independence for longer.\u201d<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-wp-embed is-provider-southwark-news wp-block-embed-southwark-news\"><div class=\"wp-block-embed__wrapper\">\n<span class=\"Pjt6diaB8Wb497XwqUeMFrZKcvhHGmSzJEpf2LgAYnkCyuRlToIO1N30V5DQx\"><blockquote class=\"wp-embedded-content\" data-secret=\"ySOi60YVuQ\"><a href=\"https:\/\/southwarknews.co.uk\/history\/history-plus\/from-the-west-end-to-camberwell-a-history-of-kings-college-hospital\/\">From the West End to Camberwell: a history of King&#8217;s College Hospital<\/a><\/blockquote><iframe class=\"wp-embedded-content\" sandbox=\"allow-scripts\" security=\"restricted\" style=\"position: absolute; visibility: hidden;\" title=\"&#8220;From the West End to Camberwell: a history of King&#8217;s College Hospital&#8221; &#8212; Southwark News\" src=\"https:\/\/southwarknews.co.uk\/history\/history-plus\/from-the-west-end-to-camberwell-a-history-of-kings-college-hospital\/embed\/#?secret=dkX4fhE38I#?secret=ySOi60YVuQ\" data-secret=\"ySOi60YVuQ\" width=\"500\" height=\"282\" frameborder=\"0\" marginwidth=\"0\" marginheight=\"0\" scrolling=\"no\"><\/iframe><\/span>\n<\/div><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>A fourteen year old boy with ALS is taking part in a research trial at King&#8217;s College Hospital that may improve the chances for people who have the condition, writes Rebecca Healy&#8230; ALS &#8211; amyotrophic lateral sclerosis &#8211; is the most common type of Motor Neurone Disease. It leads to muscle weaknesses and gets worse [&hellip;]<\/p>\n","protected":false},"author":18769,"featured_media":456921,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"sfio_featured_image":false,"sfio_embed_code":"","jnews-multi-image_gallery":[],"jnews_single_post":{"format":"standard","override":[{"template":"1","parallax":"1","fullscreen":"1","layout":"right-sidebar","sidebar":"default-sidebar","second_sidebar":"default-sidebar","sticky_sidebar":"1","share_position":"top","share_float_style":"share-monocrhome","show_share_counter":"1","show_view_counter":"1","show_featured":"1","show_post_meta":"1","show_post_author":"1","show_post_author_image":"1","show_post_date":"1","post_date_format":"default","post_date_format_custom":"Y\/m\/d","show_post_category":"1","show_post_reading_time":"0","post_reading_time_wpm":"300","post_calculate_word_method":"str_word_count","show_zoom_button":"0","zoom_button_out_step":"2","zoom_button_in_step":"3","show_post_tag":"1","show_prev_next_post":"1","show_popup_post":"1","number_popup_post":"1","show_author_box":"1","show_inline_post_related":"1"}],"image_override":[{"single_post_thumbnail_size":"crop-500","single_post_gallery_size":"crop-500"}],"trending_post_position":"meta","trending_post_label":"Trending","sponsored_post_label":"Sponsored by","disable_ad":"0","subtitle":"ALS - amyotrophic lateral sclerosis - is the most common type of Motor Neurone Disease"},"jnews_primary_category":{"id":"42"},"jnews_social_meta":[],"jnews_override_counter":{"view_counter_number":"0","share_counter_number":"0","like_counter_number":"0","dislike_counter_number":"0"},"footnotes":""},"categories":[42,7375,13539,13602],"tags":[18640,18087,148,18639],"class_list":["post-456917","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-camberwell","category-community","category-featured","category-news","tag-als","tag-camberwell","tag-kings-college-hospital","tag-motor-neurone-disease"],"_links":{"self":[{"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/posts\/456917","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/users\/18769"}],"replies":[{"embeddable":true,"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/comments?post=456917"}],"version-history":[{"count":0,"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/posts\/456917\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/media\/456921"}],"wp:attachment":[{"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/media?parent=456917"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/categories?post=456917"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/southwarknews.co.uk\/wp-json\/wp\/v2\/tags?post=456917"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}