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</o:shapelayout></xml><![endif]--></head><body lang=EN-US link="#467886" vlink="#96607D" style='word-wrap:break-word'><div class=WordSection1><p class=MsoNormal><span style='font-family:"Calibri",sans-serif'>Hi,<o:p></o:p></span></p><p class=MsoNormal><span style='font-family:"Calibri",sans-serif'><o:p> </o:p></span></p><p class=MsoNormal><span style='font-family:"Calibri",sans-serif'>Here’s something we don’t usually hear about:<o:p></o:p></span></p><p class=MsoNormal><span style='font-family:"Calibri",sans-serif'>Bryan<o:p></o:p></span></p><p class=MsoNormal><span style='font-family:"Calibri",sans-serif'><o:p> </o:p></span></p><div><div style='border:none;border-top:solid #E1E1E1 1.0pt;padding:3.0pt 0in 0in 0in'><p class=MsoNormal><b><span style='font-family:"Calibri",sans-serif;mso-ligatures:none'><o:p> </o:p></span></b></p><p class=MsoNormal><b><span style='font-family:"Calibri",sans-serif;mso-ligatures:none'>From:</span></b><span style='font-family:"Calibri",sans-serif;mso-ligatures:none'> marthajs@verizon.net <marthajs@verizon.net> <br><b>Sent:</b> Monday, January 27, 2025 4:28 AM<br><b>To:</b> marthajs@verizon.net<br><b>Subject:</b> Making Sure You Know of Stargardt Summit<o:p></o:p></span></p></div></div><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal><a name="_Hlk188431225">Our Time is Now: The 2025 Stargardt Summit<o:p></o:p></a></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Hosted by the Carroll Center for the Blind in collaboration with Foundation Fighting Blindness and The Blind Life. Sponsored by Alkeus Pharmaceuticals. <o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>In Person or Virtual via YouTube ensuring unlimited virtual access<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'><o:p> </o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Our Time is Now—there has never been a more promising time for research for treatments for Stargardt, more breathtaking advances in assistive technology, more connection between our community and helpful resources, and more excitement about the first ever fictional film in the making about Stargardt, SEEING STARS, sure to be an awareness explosion. <o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'><o:p> </o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Join us virtually or in person:<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>When: Saturday, February 22, 2025, from 10 AM to 4 PM EST<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Where In Person: Newton Country Day School of the Sacred Heart, 785 Centre Street, Newton, Massachusetts, USA<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'><o:p> </o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Panels will focus on research advances, families sharing experiences with their journeys with Stargardt, and individuals with Stargardt offering tips on advocating for oneself in educational, workplace, medical, or other settings. <o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Presenters/Moderators, all of whom have Stargardt:<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Keynote: Kenyetta McCurdy-Bird: COO of REACH Riverside Development Corporation in Delaware<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Master of Ceremonies: Adam Chodak: news anchor and managing editor at Rochester, NY, TV station<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Moderator 1: Ellen Gould: double Emmy award winning writer and actor currently making a film, SEEING STARS, about women with Stargardt<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Moderator 2: Michael Marciello, M.D.: Physiatrist with his own practice in Massachusetts and beep baseball coach<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Moderator 3: Sam Seavey: founder of The Blind Life YouTube channel and renowned assistive technology expert<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>And special video from the entertaining Two Blind Brothers, Brad and Bryan Manning<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Research panel includes Dr. Rachel Huckfeldt of Massachusetts Eye and Ear, Dr. Kenneth Fan of Retina Consultants of Texas, and Dr. Brittni Scruggs of the Mayo Clinic.<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Panelists for the other two panels include Paul Protentis and Barbara Duffy, parents of a young adult with Stargardt; Bhavna Taylor and her son, Ethan, who has Stargardt, coming from the U.K. and Stargardt’s Connected; Sarah Danny and her two young daughters with Stargardt, who call themselves the Stargardt sisters; Jack Duffy Protentis, entrepreneur and founder/CEO of eSki Watercraft; Matt Philapenko, visionary assistive technology expert at Microsoft; and Stephanie Renford, disability advocate and content creator.<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>Following the panel discussions, the virtual attendance will end (approximately 1 PM EST). In person attendees will continue to lunch and then break out sessions in the afternoon to network and connect with others in the community.<o:p></o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'><o:p> </o:p></span></p><p class=MsoNormal><span style='mso-bookmark:_Hlk188431225'>To learn more or register, please visit </span><a href="https://carroll.org/events/stargardt-summit-2025/"><span style='mso-bookmark:_Hlk188431225'>https://carroll.org/events/stargardt-summit-2025/</span><span style='mso-bookmark:_Hlk188431225'></span></a><span style='mso-bookmark:_Hlk188431225'><o:p></o:p></span></p><span style='mso-bookmark:_Hlk188431225'></span><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal><o:p> </o:p></p></div></body></html>