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DTSTART;VALUE=DATE:20250915
DTEND;VALUE=DATE:20250922
DTSTAMP:20260501T103852
CREATED:20241028T142657Z
LAST-MODIFIED:20241028T142657Z
UID:10003243-1757894400-1758499199@umdf.org
SUMMARY:World Mitochondrial Disease Week 2025
DESCRIPTION:
URL:https://umdf.org/event/world-mitochondrial-disease-week-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250918T150000
DTEND;TZID=America/New_York:20250918T160000
DTSTAMP:20260501T103852
CREATED:20250911T144801Z
LAST-MODIFIED:20250911T145011Z
UID:10004068-1758207600-1758211200@umdf.org
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/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250918T190000
DTEND;TZID=America/New_York:20250918T200000
DTSTAMP:20260501T103852
CREATED:20210727T145309Z
LAST-MODIFIED:20210727T145309Z
UID:10001158-1758222000-1758225600@umdf.org
SUMMARY:LHON - New York\, New Jersey\, Pennsylvania Connect
DESCRIPTION:Please Join Us! \nThis call for those living in New York\, New Jersey\, or Pennsylvania with an interest in LHON takes place quarterly on the third Thursday of the month at 7:00pm EST. Hosts Jim and Mary Tolve facilitate this call. Consider joining the call and sharing your experiences with others in a similar situation. \nThe following Facebook Groups are also available: \n\nNew York Group – Click here\nNew Jersey Group – Click here\nPennsylvania Group – Click here\n\nReach out to Jim Tolve at jetragnar@gmail.com with any questions. \nJoin Details:\nOne option is to use Internet Audio to call at no charge at:\nhttps://umdf.zoom.us/j/95371313871\nMeeting ID: 953 7131 3871 \nOr if your phone plan includes Unlimited Minutes\, then here are Toll Charge numbers to one-click call:\n+13017158592\,\,95371313871# US\n+13126266799\,\,95371313871# US
URL:https://umdf.org/event/lhon-new-york-new-jersey-pennsylvania-connect-2024-12-19/
CATEGORIES:LHON,Support Meeting
ORGANIZER;CN="Kara Strittmatter":MAILTO:kara@umdf.org
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