{"id":11,"date":"2026-02-06T10:48:53","date_gmt":"2026-02-06T10:48:53","guid":{"rendered":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/?page_id=11"},"modified":"2026-02-13T09:42:27","modified_gmt":"2026-02-13T09:42:27","slug":"home","status":"publish","type":"page","link":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/","title":{"rendered":"Home"},"content":{"rendered":"

[et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” custom_margin=”0px||0px||true|false” custom_padding=”0px||0px||true|false” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” width=”100%” max_width=”100%” custom_margin=”0px||0px||true|false” custom_padding=”0px||0px||true|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_slider _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_slide heading=”Welcome to FSHD UK” _builder_version=”4.27.5″ _module_preset=”default” header_level=”h1″ header_font=”–et_global_heading_font|700|||||||” header_text_color=”#122e62″ body_text_color=”#122e62″ body_font_size=”28px” body_line_height=”1.6em” background_enable_color=”off” background_image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/home-1.png” background_enable_image=”on” text_orientation=”left” width=”50%” custom_padding=”200px||200px||true|false” global_colors_info=”{}” sticky_transition=”on”]<\/p>\n

Working together as a multi-stakeholder group to expedite FSHD clinical trials to the UK<\/span><\/p>\n

[\/et_pb_slide][et_pb_slide heading=”Welcome to FSHD UK” _builder_version=”4.27.5″ _module_preset=”default” header_level=”h1″ header_font=”–et_global_heading_font|700|||||||” header_text_color=”#122e62″ body_text_color=”#122e62″ body_font_size=”28px” body_line_height=”1.6em” background_enable_color=”off” background_image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/home2.png” background_enable_image=”on” text_orientation=”left” width=”50%” custom_padding=”200px||200px||true|false” global_colors_info=”{}” sticky_transition=”on”]<\/p>\n

Working together as a multi-stakeholder group to expedite FSHD clinical trials to the UK<\/span><\/p>\n

[\/et_pb_slide][et_pb_slide heading=”Welcome to FSHD UK” _builder_version=”4.27.5″ _module_preset=”default” header_level=”h1″ header_font=”–et_global_heading_font|700|||||||” header_text_color=”#122e62″ body_text_color=”#122e62″ body_font_size=”28px” body_line_height=”1.6em” background_enable_color=”off” background_image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/home3.png” background_enable_image=”on” text_orientation=”left” width=”50%” custom_padding=”200px||200px||true|false” global_colors_info=”{}” sticky_transition=”on”]<\/p>\n

Working together as a multi-stakeholder group to expedite FSHD clinical trials to the UK<\/span><\/p>\n

[\/et_pb_slide][\/et_pb_slider][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”rgba(244,244,244,0.25)” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” global_colors_info=”{}”]<\/p>\n

About Us<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#FFFFFF” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|20px|20px|20px|20px” border_width_all=”2px” border_color_all=”rgba(0,0,0,0.26)” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/2149352658.jpg” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”|600|||||||” text_text_color=”#122e62″ text_font_size=”16px” text_line_height=”1.6em” link_text_color=”#2b56e0″ header_4_font=”–et_global_heading_font|700|||||||” header_4_text_color=”#122e62″ header_4_font_size=”24px” header_4_line_height=”2.1em” global_colors_info=”{}”]<\/p>\n

Why We Began<\/b><\/h4>\n

The UK has an excellent reputation for high quality FSHD clinical services, research teams and the established <\/span>UK FSHD Patient Registry.<\/span><\/a>\u00a0These accomplished UK centres were mainly working in their own areas without an overarching strategy or central co-ordination. There was no single group focused strategically on FSHD. The UK had missed important opportunities for clinical trials in 2020. There was a gap in making things happen for FSHD in the UK.<\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#FFFFFF” custom_margin=”50px||||false|false” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|20px|20px|20px|20px” border_width_all=”2px” border_color_all=”rgba(0,0,0,0.26)” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”|600|||||||” text_text_color=”#122e62″ text_font_size=”16px” text_line_height=”1.6em” link_text_color=”#2b56e0″ header_4_font=”–et_global_heading_font|700|||||||” header_4_text_color=”#122e62″ header_4_font_size=”24px” header_4_line_height=”2.1em” global_colors_info=”{}”]<\/p>\n

How We Began<\/b><\/h4>\n

FSHD UK <\/b>was set up in July 2021 by Rajeshri Badiani with the aim of expediting clinical trials for patients in the UK. It has since become the recognized group for coordinating such FSHD activities in the UK.<\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/home-logo-1.png” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#FFFFFF” custom_margin=”50px||||false|false” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|20px|20px|20px|20px” border_width_all=”2px” border_color_all=”rgba(0,0,0,0.26)” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/119798.jpg” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”|600|||||||” text_text_color=”#122e62″ text_font_size=”16px” text_line_height=”1.6em” link_text_color=”#2b56e0″ header_4_font=”–et_global_heading_font|700|||||||” header_4_text_color=”#122e62″ header_4_font_size=”24px” header_4_line_height=”2.1em” global_colors_info=”{}”]<\/p>\n

Where We Are Today<\/b><\/h4>\n

We have become a strong multi-stakeholder network and have had a huge success in fast-tracking FSHD activities in the UK. In December 2023 we formed a registered charity to continue to deliver on our vision and aims.<\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_text=”Previous Plans and Achievements” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_size=”18px” button_text_color=”#FFFFFF” button_bg_color=”#2b56e0″ button_border_width=”0px” button_border_radius=”16px” button_font=”|600|||||||” custom_padding=”15px|29px|15px|29px|true|true” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#eaeefc” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” global_colors_info=”{}”]<\/p>\n

Our Collaborators<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,1_4,1_4,1_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/logo-FSHD-CTRN.png” _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/logo-FSHD-society.png” _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/logo-project-mercury.png” _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/logo-world-FSHD-alliance.png” _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”2_5,3_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”2_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/mark-stone.png” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|500px|500px|500px|500px” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_3_text_color=”#122e62″ header_3_font_size=”34px” header_3_line_height=”1.2em” custom_margin=”24px||||false|false” global_colors_info=”{}”]<\/p>\n

“FSHD UK stands at the forefront of driving faster progress in treatment development and access for individuals and families living with FSHD across the UK and around the world.”<\/b><\/h3>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_text_color=”#122e62″ text_font_size=”31px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

– Mark Stone, FSHD Society<\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” global_colors_info=”{}”]<\/p>\n

What is FSHD?<\/b><\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_5,2_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

Facioscapulohumeral muscular dystrophy (FSHD) is a disorder characterized by muscle weakness and wasting (atrophy). The condition gets its name from the muscles most commonly affected:<\/span><\/p>\n

    \n
  • face (facio)<\/span><\/li>\n
  • shoulder blades (scapulo)<\/span><\/li>\n
  • upper arms (humeral)<\/span><\/li>\n<\/ul>\n

    Some of the symptoms are shown in the diagram provided. For a fuller understanding, please refer to the FSHD Society link below.<\/span><\/p>\n

    [\/et_pb_text][et_pb_button button_text=”About FSHD” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/living-with-fshd\/understanding-fshd\/symptoms\/)” url_new_window=”on” button_text=”FSHD Society” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/Screenshot-2026-02-06-at-11.28.17.png” _builder_version=”4.27.5″ _module_preset=”default” max_width=”345px” module_alignment=”center” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” global_colors_info=”{}”]<\/p>\n

    Information for\u2026<\/b><\/h2>\n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#FFFFFF” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|20px|20px|20px|20px” border_width_all=”2px” border_color_all=”rgba(0,0,0,0.26)” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/2149352658.jpg” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”|600|||||||” text_text_color=”#122e62″ text_font_size=”16px” text_line_height=”1.6em” link_text_color=”#2b56e0″ header_4_font=”–et_global_heading_font|700|||||||” header_4_text_color=”#122e62″ header_4_font_size=”24px” header_4_line_height=”2.1em” global_colors_info=”{}”]<\/p>\n

    Patients<\/b><\/h4>\n

    Our patient section points to key information sources and support organisations that may help you on your FSHD journey. You will find pointers to other FSHD Organisations; UK FSHD Registry, FSHD Society, MDUK and more.<\/span><\/p>\n

    [\/et_pb_text][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/living-with-fshd\/understanding-fshd\/symptoms\/)” url_new_window=”on” button_text=”Info for Patients” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_size=”18px” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#FFFFFF” custom_margin=”50px||||false|false” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|20px|20px|20px|20px” border_width_all=”2px” border_color_all=”rgba(0,0,0,0.26)” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”|600|||||||” text_text_color=”#122e62″ text_font_size=”16px” text_line_height=”1.6em” link_text_color=”#2b56e0″ header_4_font=”–et_global_heading_font|700|||||||” header_4_text_color=”#122e62″ header_4_font_size=”24px” header_4_line_height=”2.1em” global_colors_info=”{}”]<\/p>\n

    Clinicians<\/b><\/h4>\n

    Our clinician section provides up-to-date information on clinical trials and natural history studies on FSHD. There are links to guidance on clinical trial processes and natural history studies. We also introduce the clinicians that are part of the FSHD UK network who are currently running these studies in the UK.<\/span><\/p>\n

    [\/et_pb_text][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/living-with-fshd\/understanding-fshd\/symptoms\/)” url_new_window=”on” button_text=”Info for Clinicians” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_size=”18px” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_slider arrows_custom_color=”#122e62″ dot_nav_custom_color=”#122e62″ _builder_version=”4.27.5″ _module_preset=”default” custom_margin=”0px||0px||true|false” custom_padding=”0px||0px||true|false” global_colors_info=”{}”][et_pb_slide heading=”Dr. Emma Matthews” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/01-emma-matthews-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][et_pb_slide heading=”Dr. Enrico Bugiardini” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/02-enrico-bugiardini-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][et_pb_slide heading=”Dr. James Lilleker” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/03-james-lilleker-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][et_pb_slide heading=”Dr. Maria Elena Farrugia ” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/04-maria-elena-farrugia-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][et_pb_slide heading=”Dr. Tracey Willis” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/05-tracey-willis-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][et_pb_slide heading=”Dr. Grace McMacken” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/06-grace-mcmacken-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][et_pb_slide heading=”Dr. Giorgia Tasca” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/07-giorgio-tasca-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][et_pb_slide heading=”Dr. Channa Hewamadduma” image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/08-channa-hewamadduma-headshot.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”off” global_colors_info=”{}” sticky_transition=”on”][\/et_pb_slide][\/et_pb_slider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#FFFFFF” custom_margin=”50px||||false|false” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|20px|20px|20px|20px” border_width_all=”2px” border_color_all=”rgba(0,0,0,0.26)” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/18063.jpg” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|20px|20px|20px|20px” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”|600|||||||” text_text_color=”#122e62″ text_font_size=”16px” text_line_height=”1.6em” link_text_color=”#2b56e0″ header_4_font=”–et_global_heading_font|700|||||||” header_4_text_color=”#122e62″ header_4_font_size=”24px” header_4_line_height=”2.1em” global_colors_info=”{}”]<\/p>\n

    Researchers<\/b><\/h4>\n

    In our research section we will share basic research papers\/information shared with us by researchers on FSHD around the world. We hope to update our patient community on up and coming developments in FSHD.<\/span><\/p>\n

    [\/et_pb_text][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/living-with-fshd\/understanding-fshd\/symptoms\/)” url_new_window=”on” button_text=”Info for Patients” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_size=”18px” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” background_color=”#eaeefc” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” custom_margin=”||-18px|||” global_colors_info=”{}”]<\/p>\n

    Our Key Aims<\/b><\/h2>\n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_5,2_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    Our key aims are to continue to drive for clinical trial readiness for FSHD patients and work as a network to:<\/span><\/p>\n

    [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_text_color=”rgba(0,0,0,0.94)” text_font_size=”22px” text_line_height=”1.5em” header_text_color=”#000000″ header_3_font_size=”28px” header_3_line_height=”1.6em” background_color=”#FFFFFF” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|25px|25px|25px|25px” border_width_all=”2px” border_color_all=”#122e62″ global_colors_info=”{}”]<\/p>\n

    Aim 1:<\/b> Information and Support<\/span><\/h3>\n

    Provide information and peer support to patients, families, and carers to build a mobilized community<\/span><\/p>\n

    [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_text_color=”rgba(0,0,0,0.94)” text_font_size=”22px” text_line_height=”1.5em” header_text_color=”#000000″ header_3_font_size=”28px” header_3_line_height=”1.6em” background_color=”#FFFFFF” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|25px|25px|25px|25px” border_width_all=”2px” border_color_all=”#122e62″ global_colors_info=”{}”]<\/p>\n

    Aim 2:<\/b> Raising Awareness<\/span><\/h3>\n

    Raise awareness of FSHD among the public, medical, and scientific communities<\/span><\/p>\n

    [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_text_color=”rgba(0,0,0,0.94)” text_font_size=”22px” text_line_height=”1.5em” header_text_color=”#000000″ header_3_font_size=”28px” header_3_line_height=”1.6em” background_color=”#FFFFFF” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|25px|25px|25px|25px” border_width_all=”2px” border_color_all=”#122e62″ global_colors_info=”{}”]<\/p>\n

    Aim 3:<\/b> Collaboration<\/span><\/h3>\n

    Attract FSHD clinical trials to the UK by fostering collaboration with researchers and industry<\/span><\/p>\n

    [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_text_color=”rgba(0,0,0,0.94)” text_font_size=”22px” text_line_height=”1.5em” header_text_color=”#000000″ header_3_font_size=”28px” header_3_line_height=”1.6em” background_color=”#FFFFFF” custom_padding=”50px|50px|50px|50px|true|true” border_radii=”on|25px|25px|25px|25px” border_width_all=”2px” border_color_all=”#122e62″ global_colors_info=”{}”]<\/p>\n

    Aim 4:<\/b> Funding<\/span><\/h3>\n

    Fund research to address critical gaps in FSHD knowledge\u00a0<\/span><\/p>\n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/Untitled-design-93.png” _builder_version=”4.27.5″ _module_preset=”default” sticky_position=”top” sticky_limit_bottom=”row” sticky_position_tablet=”none” sticky_position_phone=”none” sticky_position_last_edited=”on|desktop” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    From mid-2023 FSHD Clinical Trials have started in the UK.<\/span><\/p>\n

    [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” header_3_font_size=”29px” global_colors_info=”{}”]<\/p>\n

    Our work does not stop here.<\/strong><\/h3>\n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    We have more to do to make sure we get up and coming clinical trials to the UK, access to appropriate therapies, and that research into FSHD does not stop.<\/span><\/p>\n

    [\/et_pb_text][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/living-with-fshd\/understanding-fshd\/symptoms\/)” url_new_window=”on” button_text=”Support Us” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_size=”18px” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” custom_padding=”10px|50px|10px|50px|true|true” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”||29px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” custom_margin=”||-18px|||” global_colors_info=”{}”]<\/p>\n

    Our Team<\/b><\/h2>\n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    We work with a group of stakeholders that include clinicians, clinical support teams, patients, UK FSHD Registry, research scientists, MDUK, FSHD Society and the Muscular Dystrophy Muscle Centre (Midlands).<\/span><\/p>\n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    This stakeholder model and our ways of working with our five teams overarched by a Core Team has been a bedrock to our success and has enabled us to drive multiple initiatives.<\/span><\/p>\n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_text=”Core Team” button_alignment=”center” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_size=”29px” button_text_color=”#122e62″ button_border_width=”2px” button_border_radius=”50px” button_font=”|700|||||||” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_5,1_5,1_5,1_5,1_5″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.5″ _module_preset=”default” width=”100%” max_width=”90%” global_colors_info=”{}”][et_pb_column type=”1_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/team-1-1.png” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#000000″ text_font_size=”16px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    Sub-Team 1<\/b><\/span><\/h3>\n

    Stakeholder Management, Health Economics Review, and Fundraising<\/span><\/p>\n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/team-2.png” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#000000″ text_font_size=”16px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    Sub-Team 2<\/b><\/h3>\n

    Clinical Site Readiness and In-Clinic Assessments<\/span><\/p>\n

    \n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/team-3ng.png” _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#000000″ text_font_size=”16px” text_line_height=”1.6em” global_colors_info=”{}”]<\/p>\n

    Sub-Team 3<\/b><\/h3>\n

    \u00a0Patient Engagement<\/span><\/p>\n

    \n

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    \u00a0Sub-Team 4<\/b><\/h3>\n

    Research Strategy<\/span><\/p>\n

    \n

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    Sub-Team 5<\/b><\/h3>\n

    Technical \/ Web \/ IT<\/span><\/p>\n

    \n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/living-with-fshd\/understanding-fshd\/symptoms\/)” url_new_window=”on” button_text=”Meet The Team” button_alignment=”center” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_size=”18px” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” custom_padding=”10px|50px|10px|50px|true|true” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”6px||0px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” width=”100%” max_width=”90%” global_colors_info=”{}” custom_padding=”||0px|||”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_code _builder_version=”4.27.5″ _module_preset=”default” border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}”]