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X-WR-CALNAME:Cystinosis Research Network
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X-WR-CALDESC:Events for Cystinosis Research Network
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BEGIN:VEVENT
DTSTART;TZID=UTC:20200905T160000
DTEND;TZID=UTC:20200905T173000
DTSTAMP:20260422T111847
CREATED:20200903T150208Z
LAST-MODIFIED:20201001T142405Z
UID:2564-1599321600-1599327000@cystinosis.org
SUMMARY:Cystinosis Sessions: Open Discussion
DESCRIPTION:This installment of the Cystinosis Sessions video conference series is live on Saturday\, September 5 at 4:00 pm ET. Our September session will be an open forum to discuss the topics on the minds of our fellow cystinosis warriors.  We hope you can join us! \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nCystinosis Sessions were created and are hosted by the Adult Leadership Advisory Board (ALAB). Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-session-open-discussion/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200919T170000
DTEND;TZID=UTC:20200919T183000
DTSTAMP:20260422T111847
CREATED:20200917T152146Z
LAST-MODIFIED:20200917T152146Z
UID:2570-1600534800-1600540200@cystinosis.org
SUMMARY:Caregivers Connect: Virtual Meetup
DESCRIPTION:Caregivers of children with cystinosis under 18 years old are invited.\nJoin us for a video conference to connect with other caregivers. This is a free networking opportunity. Register at https://us02web.zoom.us/meeting/register/tZUpde2tqj8uH9yGl5nmGG6v1TvprXaLgtOV.\n\nFREE welcome kits – limited availability.\nWe hope to see you there!
URL:https://cystinosis.org/event/caregivers-connect-virtual-meetup/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/Caregivers_18condensed.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200929T190000
DTEND;TZID=UTC:20200929T203000
DTSTAMP:20260422T111847
CREATED:20200917T152803Z
LAST-MODIFIED:20200917T153022Z
UID:2573-1601406000-1601411400@cystinosis.org
SUMMARY:Cystinosis Basics: Virtual Meetups
DESCRIPTION:Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum\, Emory School of Medicine is our expert speaker. Join us by registering today at https://us02web.zoom.us/webinar/register/WN_HU0G6SQuR4W_G8mmFr3bog.\n\nFREE welcome kits – limited availability.\nWe hope you can join us!
URL:https://cystinosis.org/event/cystinosis-basics-virtual-meetups/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/CystinosisBasics.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201003T120000
DTEND;TZID=UTC:20201003T133000
DTSTAMP:20260422T111847
CREATED:20201001T143243Z
LAST-MODIFIED:20201001T143243Z
UID:2601-1601726400-1601731800@cystinosis.org
SUMMARY:Cystinosis Sessions: Alternative Therapies\, Exercise & Activities
DESCRIPTION:Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday\, October 3 at 12:00 pm ET. This open discussion will include alternative therapies\, exercise and activities. \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nHere are instructions to help with downloading Zoom. We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-sessions-alternative-therapies-exercise-activities/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201006T190000
DTEND;TZID=UTC:20201006T203000
DTSTAMP:20260422T111847
CREATED:20200917T153750Z
LAST-MODIFIED:20200917T153750Z
UID:2576-1602010800-1602016200@cystinosis.org
SUMMARY:Cystinosis & Mental Health: Virtual Meetup
DESCRIPTION:Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed psychologist\, Dr. Cortney Taylor Zimmerman will guide the meetup. \nRegister today at https://us02web.zoom.us/webinar/register/WN_Gw1Wxj3oQkCi00OpR2WFPQ. \nWelcome kits are here – with limited availability.
URL:https://cystinosis.org/event/cystinosis-mental-health-virtual-meetup/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/mentalhealth.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201014T190000
DTEND;TZID=UTC:20201014T203000
DTSTAMP:20260422T111847
CREATED:20200917T162806Z
LAST-MODIFIED:20200917T162806Z
UID:2579-1602702000-1602707400@cystinosis.org
SUMMARY:Cystinosis Gene Therapy & Research Updates: Virtual Meetup
DESCRIPTION:Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University School of Medicine and Fernanda Copeland\, MS\, RD. Head\, Global Patient Advocacy & Engagement\, AVROBIO are our guest speakers. \n  \nRegister today to reserve your space at https://us02web.zoom.us/webinar/register/WN_PQZeGL2GT5W1MythBHbDzA. \nFREE welcome kits are here – availability is limited.
URL:https://cystinosis.org/event/cystinosis-gene-therapy-research-updates-virtual-meetup/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/research.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20201102
DTSTAMP:20260422T111847
CREATED:20201021T184456Z
LAST-MODIFIED:20201021T202417Z
UID:2705-1604188800-1604275199@cystinosis.org
SUMMARY:LLLFF Virtual 5K
DESCRIPTION:On the one year anniversary of Laura McGinnis’ passing\, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life in pursuit of adventure\, making memories every step of the way. We’d like to keep her spirit alive by fulfilling as many “fun” requests for the cystinosis community as possible. To grow our funding\, we are hosting a virtual 5k on November 1\, 2020.\n\nWe invite friends\, family\, and anyone who has been touched by her story and/or cystinosis to take part. It doesn’t matter if you walk\, jog\, stroll\, bike\, or scooter; let’s take this time to move our bodies and reflect.\n\nHosting a virtual 5k means you can participate from anywhere in the world! We’ve got in-person teams meeting on November 1st from Pennsylvania to Kauai. \n\n\n\nOnline registration is $25 per person. As a small token of gratitude\, you’ll receive a commemorative “Live Like Laura” ornament. For any questions\, contact Frankie McGinnis at frankiemcginnis@gmail.com.
URL:https://cystinosis.org/event/lllff-virtual-5k/
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20201101T110000
DTEND;TZID=America/Halifax:20201101T150000
DTSTAMP:20260422T111847
CREATED:20201007T164848Z
LAST-MODIFIED:20201021T172215Z
UID:2603-1604228400-1604242800@cystinosis.org
SUMMARY:Mulligans Fore Morgan
DESCRIPTION:Join us for our first Mulligans Fore Morgan event at TopGolf in Cleveland on Sunday\, November 1st at 11:00 AM. \nRegistration is $75 per player for 3 hours of unlimited play. Each golf bay will hold teams of 6.  An “All-American” lunch is included. Guests will pay individually for alcoholic beverages. \n \n  \n2020 has brought Morgan Peachman a new kidney\, and a new lease on life. After turning 13 this summer\, and hitting her six month kidney-versary last month\, she’s been cleared for most normal activities. And she’ll be hitting the day’s ceremonial first tee shot! \nWhile nothing feels normal this year\, The Peachman Family is keeping with the theme of changing times by bringing their family’s annual fall fundraising event to TopGolf in Cleveland to ensure social distancing! \nWhether you’re an avid golfer\, playing for fun\, or have never hit a golf ball in your life\, our tournament style format will hit all the marks. Competitive\, lots of fun and in support of a good cause\, we hope you’ll join us November 1st! If you can’t attend\, donations are welcomed and sponsorship opportunities are available. Contact Jen Peachman at jennifer.peachman@gmail.com for details or register using the form below.
URL:https://cystinosis.org/event/morgan/
LOCATION:5820 Rockside Woods Blvd N\, 5820 Rockside Woods Blvd N\, Independence\, OH\, 44131\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/10/Mulligans-Fore-Morgan-Logo.png
ORGANIZER;CN="Jen Peachman":MAILTO:jennifer.peachman@gmail.com
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