{"id":11091,"date":"2024-03-26T16:29:26","date_gmt":"2024-03-26T16:29:26","guid":{"rendered":"https:\/\/www.healthnews.ie\/?p=11091"},"modified":"2024-03-28T21:11:54","modified_gmt":"2024-03-28T21:11:54","slug":"taking-actionable-steps-together-to-find-a-cure-for-motor-neurone-disease","status":"publish","type":"post","link":"https:\/\/www.healthnews.ie\/clinical-trials\/taking-actionable-steps-together-to-find-a-cure-for-motor-neurone-disease\/","title":{"rendered":"Taking actionable steps together to find a cure for motor neurone disease"},"content":{"rendered":"\n<div style=\"background-color:#f2f2f2;color:#32373c\" class=\"wp-block-atomic-blocks-ab-profile-box round ab-has-avatar ab-font-size-14 ab-block-profile ab-profile-columns\"><div class=\"ab-profile-column ab-profile-avatar-wrap\"><div class=\"ab-profile-image-wrap\"><figure class=\"ab-profile-image-square\"><img loading=\"lazy\" decoding=\"async\" width=\"250\" height=\"250\" class=\"ab-profile-avatar wp-image-11094\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205856\/MH-Headshot-2024.jpg\" alt=\"\" srcset=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205856\/MH-Headshot-2024.jpg 250w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205856\/MH-Headshot-2024-125x125.jpg 125w\" sizes=\"auto, (max-width: 250px) 100vw, 250px\" \/><\/figure><\/div><\/div><div class=\"ab-profile-column ab-profile-content-wrap\"><h2 class=\"ab-profile-name\" style=\"color:#32373c\">Professor Martina Hennessy<\/h2><p class=\"ab-profile-title\" style=\"color:#32373c\">Director of the Wellcome-HRB Clinical Research facility at St James\u2019s Hospital and Trinity College, Dublin<\/p><div class=\"ab-profile-text\"><\/div><ul class=\"ab-social-links\"><\/ul><\/div><\/div>\n\n\n\n<div style=\"background-color:#f2f2f2;color:#32373c\" class=\"wp-block-atomic-blocks-ab-profile-box round ab-has-avatar ab-font-size-14 ab-block-profile ab-profile-columns\"><div class=\"ab-profile-column ab-profile-avatar-wrap\"><div class=\"ab-profile-image-wrap\"><figure class=\"ab-profile-image-square\"><img loading=\"lazy\" decoding=\"async\" width=\"250\" height=\"250\" class=\"ab-profile-avatar wp-image-11095\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205855\/Michael-Campbell.jpg\" alt=\"\" srcset=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205855\/Michael-Campbell.jpg 250w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205855\/Michael-Campbell-125x125.jpg 125w\" sizes=\"auto, (max-width: 250px) 100vw, 250px\" \/><\/figure><\/div><\/div><div class=\"ab-profile-column ab-profile-content-wrap\"><h2 class=\"ab-profile-name\" style=\"color:#32373c\">Mr Michael Campbell<\/h2><p class=\"ab-profile-title\" style=\"color:#32373c\">Participant in the Motor Neurone Clinical Trial at the Wellcome-HRB Clinical Research facility at St James\u2019s Hospital<\/p><div class=\"ab-profile-text\"><p><em>Photographer &#8211; Gabrielle Masterson<\/em><\/p><\/div><ul class=\"ab-social-links\"><\/ul><\/div><\/div>\n\n\n\n<p><em>Irish patient participates in trial informing development of new drugs for motor neurone disease.<\/em><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p>While on stage at the Dublin Fringe festival, actor and writer Michael Campbell tripped and fell. Eight months later, he was diagnosed with a rare type of inherited motor neurone disease (MND), for which there is no cure.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-motor-neurone-disease\"><strong>Motor neurone disease<\/strong><\/h2>\n\n\n\n<p>Motor neurone disease affects the nerves and brain. Symptoms include muscle weakness, slurred speech and difficulty swallowing, progressively increasing over time; most cases are sporadic with around 10% of cases inherited. Campbell\u2019s case was especially rare, stemming from a fault in his FUS gene, occurring in approximately 300 people worldwide.<\/p>\n\n\n\n<p>Campbell\u2019s father died from the same disease. Although stunned by the diagnosis, he immediately contacted Professor Orla Hardiman, Ireland\u2019s leading neurologist for MND and began seeking clinical trials of new drugs. He found one just beginning at St James&#8217;s Hospital.<\/p>\n\n\n<div id=\"healt-3363631550\"><div class=\"healt-adlabel\">Advertisements<\/div><div id=\"healt-1562598929\" style=\"margin-top: 30px;margin-bottom: 30px;margin-left: auto;margin-right: auto;text-align: center;\"><a data-no-instant=\"1\" href=\"https:\/\/www.sjhcrf.ie\/\" rel=\"noopener\" class=\"a2t-link\" target=\"_blank\" aria-label=\"Wellcome template2\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2.jpg\" alt=\"\"  srcset=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2.jpg 1563w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2-768x256.jpg 768w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2-1536x512.jpg 1536w\" sizes=\"auto, (max-width: 1563px) 100vw, 1563px\" width=\"750\" height=\"250\"  style=\"display: inline-block;\" \/><\/a><\/div><\/div>\n\n\n<h2 class=\"wp-block-heading\" id=\"h-mnd-clinical-research-facility\"><strong>MND clinical research facility<\/strong><strong><\/strong><\/h2>\n\n\n\n<p>\u201cThe standard of care has been nothing short of amazing. I am constantly being checked in on, and I feel like part of the team,\u201d Campbell says. Although the outcome is not guaranteed, he knows this is an \u201cactionable step forward to identifying a potential treatment,\u201d he says.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>Provide greater access to innovative medicines.<\/p>\n<\/blockquote>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-research-centres-improving-outcomes\"><strong>Research centres improving outcomes<\/strong><strong><\/strong><\/h2>\n\n\n\n<p>Opened in May 2013, the <a href=\"https:\/\/www.sjhcrf.ie\" target=\"_blank\" rel=\"noreferrer noopener\">Wellcome-HRB purpose-built clinical research facility (CRF)<\/a> has grown from strength to strength, supporting a wide variety of clinical trials and studies and specialising in early-phase and advanced therapy trials. Professor Martina Hennessy, its Director, shines a light on how research improves clinical outcomes.<\/p>\n\n\n\n<p>She says: \u201cEvidence shows that research-performing hospitals, including clinical trials, provide greater access to innovative medicines, make better use of evidence, offer more precise care, attract more highly qualified staff, have better facilities and greater capacity to develop novel approaches to the least well-served diseases.\u201d<\/p>\n\n\n<div id=\"healt-1220848258\"><div class=\"healt-adlabel\">Advertisements<\/div><div id=\"healt-4149416604\" style=\"margin-top: 30px;margin-bottom: 30px;margin-left: auto;margin-right: auto;text-align: center;\"><a data-no-instant=\"1\" href=\"https:\/\/www.sjhcrf.ie\/\" rel=\"noopener\" class=\"a2t-link\" target=\"_blank\" aria-label=\"Wellcome template2\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2.jpg\" alt=\"\"  srcset=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2.jpg 1563w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2-768x256.jpg 768w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205852\/Wellcome-template2-1536x512.jpg 1536w\" sizes=\"auto, (max-width: 1563px) 100vw, 1563px\" width=\"750\" height=\"250\"  style=\"display: inline-block;\" \/><\/a><\/div><\/div>\n\n\n<h2 class=\"wp-block-heading\" id=\"h-patient-engagement-for-progress\"><strong>Patient engagement for progress<\/strong><strong><\/strong><\/h2>\n\n\n\n<p>\u201cWith patients and clinicians working in partnership \u2026 we can design better trials that begin to unlock the potential of new medicines. Irish patients are positive about engaging with research and about contributing to the quality of the data, which informs the development of new drugs worldwide,\u201d she says.<\/p>\n\n\n\n<p>\u201cThey do it for themselves but also their families and society. The outcome is unknown, but CRF staff are with them every step \u2026 to make it as safe as possible,\u201d explains Prof Hennessy.<\/p>\n\n\n\n<p>She stresses the importance of working with patients with rare diseases. \u201cWith patients like Campbell as part of the team, there is always hope,\u201d she insists. Today, Campbell is continuing to write and act \u2014 showcasing that life perseveres despite the challenge of disability, thanks to today\u2019s research landscape.<\/p>\n\n\n<!DOCTYPE html PUBLIC \"-\/\/W3C\/\/DTD HTML 4.0 Transitional\/\/EN\" \"http:\/\/www.w3.org\/TR\/REC-html40\/loose.dtd\">\n<html><body><div style=\"text-align:center\" class=\"wp-block-atomic-blocks-ab-button ab-block-button\"><a href=\"https:\/\/www.sjhcrf.ie\" class=\"ab-button ab-button-shape-rounded ab-button-size-medium fb-pixel\" style=\"color:#ffffff;background-color:#3373dc\">Click here to learn more<\/a><\/div>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"<p>Irish patient participates in trial informing development of new drugs for motor neurone disease. While on stage at the Dublin Fringe festival, actor and writer Michael Campbell tripped and fell. Eight months later, he was diagnosed with a rare type of inherited motor neurone disease (MND), for which there is no cure. Motor neurone disease &hellip; <a href=\"https:\/\/www.healthnews.ie\/clinical-trials\/taking-actionable-steps-together-to-find-a-cure-for-motor-neurone-disease\/\">Continued<\/a><\/p>\n","protected":false},"author":23,"featured_media":11096,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5829],"tags":[5898],"class_list":["post-11091","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-clinical-trials","tag-clinical-trials-q1-2024"],"acf":[],"featured_image_src":"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205855\/photo-to-be-included-for-trinity-600x400.jpg","featured_image_src_square":"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/03\/07205855\/photo-to-be-included-for-trinity-600x600.jpg","author_info":{"display_name":"Your Future Career","author_link":"https:\/\/www.healthnews.ie\/author\/harveyodonnell\/"},"vicky_index_order":"","_links":{"self":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/11091","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/users\/23"}],"replies":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/comments?post=11091"}],"version-history":[{"count":3,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/11091\/revisions"}],"predecessor-version":[{"id":11198,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/11091\/revisions\/11198"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/media\/11096"}],"wp:attachment":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/media?parent=11091"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/categories?post=11091"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/tags?post=11091"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}