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DTSTART;TZID=America/New_York:20250916T190000
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DTSTAMP:20260430T151204
CREATED:20250811T145139Z
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SUMMARY:UMDF Ask the Mito Doc Webcast Series – Seizures in Patients with Mito
DESCRIPTION:The United Mitochondrial Disease Foundation is pleased to offer the Ask the Mito Doc Webcast Series on a monthly basis to keep our patients and families connected to the mitochondrial medical community.  Each month\, we will highlight a specific topic with a short presentation and allow 15-20 minutes for question and answer time with the clinicians and guest speakers. \n\nJoin us on September 16\, 2025\nat 4:00pm Pacific/5:00pm Mountain/6:00pm Central/7:00pm Eastern \nClick Here to Register \nAgenda \n\nSeizure Management in Patients with Mitochondrial Disease\nSpeakers: \n\nRussell Saneto\, DO\, PhD\, Seattle Children’s Hospital\, Seattle\, Washington\n\n\n\nWe invite you to submit your questions for the Ask the Mito Doc webcast in advance.  We will take as many questions as possible before\, during and after the webinar.  Question and Answer Protocol – Most questions pertinent to the monthly topic are typically addressed during the presentation(s).  Please note that not all questions can be answered through this forum.  If you submit a question and do not receive a response\, please do not hesitate to contact us at margaret.moore@umdf.org.  \nClick Here to Submit Your Question! \nWe hope you can join us September 16\, 2025.  Registration is required.  After registering\, you will receive a confirmation email with Zoom credentials.  \nIf you are new to using ZOOM\, we suggest that you log in early on your computer or the device you plan to use.  Feel free to log in to the meeting link today.  It is so important that you do this in advance as we may not be able to assist you once the webcast begins.  If you have any questions\, contact Margaret Moore at margaret.moore@umdf.org or 412-744-1061\, ext 105. \nWe are committed to providing needed support for our patient community.   \nCall our support line at 1-888-900-MITO to speak with a member of our patient services team.\nAlways remember\, we are here to help you and your family through your journey! \nSpecial Thanks to \n  \n \n 
URL:https://umdf.org/event/umdf-ask-the-mito-doc-webcast-series-seizuresinmito/
CATEGORIES:Ask the Mito Doc,Education
ORGANIZER;CN="Kara Strittmatter":MAILTO:kara@umdf.org
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DTSTART;TZID=America/New_York:20250918T150000
DTEND;TZID=America/New_York:20250918T160000
DTSTAMP:20260430T151204
CREATED:20250911T144801Z
LAST-MODIFIED:20250911T145011Z
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SUMMARY:Community Webinar with Saol Therapeutics to Discuss SL1009 (DCA)
DESCRIPTION:Register Here Community Webinar with Saol Therapeutics to Discuss SL1009 (DCA)\nThursday\, September 18\, 3:00 PM – 4:00 PM EDT  \nLast week\, Saol Therapeutics shared the FDA has issued a Complete Response Letter (CRL) regarding the company’s application for dichloroacetate (DCA) to treat Pyruvate Dehydrogenase Complex Deficiency (PDCD). In this CRL\, the FDA declined to approve DCA at this time and requested that Saol initiate a new clinical trial to address remaining questions. Here you will find a community statement from Saol. \nWe are deeply disappointed by this outcome and mindful of what it means for families awaiting options. Our collective organizations remain committed to advocating for timely\, patient-centered next steps\, engaging with regulators\, and keeping you informed as more details emerge. You can read our full statement here. \nAs part of that commitment\, you’re invited to a special webinar on Thursday\, September 18\, at 3pm EDT\, where you can submit questions and hear directly from Saol leadership regarding DCA\, the clinical trial\, and the path forward with the FDA. Any questions you would like to ask can be submitted on the registration page. \nHost:\nFrances Pimentel\, Hope for PDCD \nFeatured speakers include:\nDave Penake\, CEO\, Saol Therapeutics\nKyle Ashton\, PhD\, Head of Medical Affairs\, Saol Therapeutics\nSharon Hamm\, Pharm.D.\, RPH\, Chief Development Officer\, Saol Therapeutics\nBrian Nappi\, Chief Strategy Officer\, Saol Therapeutics
URL:https://umdf.org/event/community-webinar-with-saol-therapeutics-to-discuss-sl1009-dca/
CATEGORIES:Clinical Trials,Education
ORGANIZER;CN="Kara Strittmatter":MAILTO:kara@umdf.org
LOCATION:https://umdf.org/event/community-webinar-with-saol-therapeutics-to-discuss-sl1009-dca/
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