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BEGIN:VEVENT
DTSTART;TZID=UTC:20220108T160000
DTEND;TZID=UTC:20220108T170000
DTSTAMP:20260403T180650
CREATED:20220106T164011Z
LAST-MODIFIED:20220106T164011Z
UID:3533-1641657600-1641661200@cystinosis.org
SUMMARY:Cystinosis Sessions: January Video Call
DESCRIPTION:Saturday\, January 8th at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community. \nPlease note: this is not just for adults living with cystinosis\, everyone interested is invited to attend. \nTo join\, click: https://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-january-video-call-2/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211002T160000
DTEND;TZID=UTC:20211002T170000
DTSTAMP:20260403T180650
CREATED:20210930T154448Z
LAST-MODIFIED:20210930T181033Z
UID:3429-1633190400-1633194000@cystinosis.org
SUMMARY:Cystinosis Sessions: October Video Call
DESCRIPTION:Saturday\, October 2nd at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with others in the cystinosis community about current events\, travel and vacation tips\, staying safe curing COVID-19\, and whatever is on your mind. \nPlease note: this is not just for adults living with cystinosis\, everyone interested is invited to attend. \nTo join\, click: https://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-october-video-call/
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:20210911T160000
DTEND;TZID=UTC:20210911T170000
DTSTAMP:20260403T180650
CREATED:20210910T143200Z
LAST-MODIFIED:20210910T144633Z
UID:3379-1631376000-1631379600@cystinosis.org
SUMMARY:Cystinosis Sessions: September Video Call
DESCRIPTION:Saturday\, September 11th at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. \nTOPICS  \nThe month’s central topic is COVID-19 and vaccines. This is a fluid discussion and will include the latest CDC announcements\, mental and physical well-being\, side effects encountered after receiving COVID-19 vaccines\, the booster shot available for immunocompromised individuals\, personal experiences\, and more. \nALL are invited to attend. Please note: this is not just for adults living with cystinosis. \nTo join\, click: https://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-september-video-call/
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:20210814T090000
DTEND;TZID=UTC:20210814T144500
DTSTAMP:20260403T180650
CREATED:20210224T001230Z
LAST-MODIFIED:20210722T170215Z
UID:3021-1628931600-1628952300@cystinosis.org
SUMMARY:CRN Golf Tournament: Myrtle Beach
DESCRIPTION:The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network on Saturday\, August 14th. Click here to register today or make a donation through this website.
URL:https://cystinosis.org/event/crn-golf-tournament-myrtle-beach/
LOCATION:Myrtle Beach National Golf Club\, 4900 National Drive\, Myrtle Beach\, SC\, 29779\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/07/Screen-Shot-2021-07-22-at-1.00.08-PM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210807T160000
DTEND;TZID=UTC:20210807T170000
DTSTAMP:20260403T180650
CREATED:20210804T192959Z
LAST-MODIFIED:20210804T192959Z
UID:3339-1628352000-1628355600@cystinosis.org
SUMMARY:Cystinosis Sessions: August Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom. \nTOPICS \nALAB members will lead a discussion about the CRN Virtual Conference (held July 16-18\, 2021). \nTo join\, click: https://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-august-video-call/
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:20210716T180000
DTEND;TZID=UTC:20210718T154500
DTSTAMP:20260403T180650
CREATED:20200415T003642Z
LAST-MODIFIED:20210804T181608Z
UID:2402-1626458400-1626623100@cystinosis.org
SUMMARY:2021 CRN Summer Online Conference
DESCRIPTION:Our biennial conference took place – virtually – July 16 – July 18\, 2021. \nWith the safety and health of our community in mind\, we shifted from an in-person event to a 100% online conference series. We are focused on providing an educational\, supportive\, engaging and fun experience. The beat goes on! \nThe conference is currently closed. However\, select sessions are available now on our YouTube channel and you can review the agenda here. \nOur original 2021 conference location of Nashville\, Tennessee will now host our face-to-face celebration in 2023. We hope to host more in person regional gatherings in 2022. Please be sure to check back on our website and social outlets for future announcements.
URL:https://cystinosis.org/event/announcement-2021-family-conference/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2020/04/TheBeatGoesOn_Virtual.jpg
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210710T160000
DTEND;TZID=UTC:20210710T170000
DTSTAMP:20260403T180650
CREATED:20210709T131946Z
LAST-MODIFIED:20210709T131946Z
UID:3297-1625932800-1625936400@cystinosis.org
SUMMARY:Cystinosis Sessions: July Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. \nTOPICS  \nThe conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18\, 2021).  \nTo join\, click: https://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-july-video-call/
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:20210605T160000
DTEND;TZID=UTC:20210605T170000
DTSTAMP:20260403T180650
CREATED:20210604T204721Z
LAST-MODIFIED:20210604T204721Z
UID:3268-1622908800-1622912400@cystinosis.org
SUMMARY:Cystinosis Sessions: June Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. \nThe conversation is open to the entire cystinosis community. This month’s topic is stress. Let’s discuss what we do for relief and ideas that may help in the future. \nTo join\, click: https://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. \n  \n  \n 
URL:https://cystinosis.org/event/cystinosis-sessions-june-video-call/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210507
DTEND;VALUE=DATE:20210508
DTSTAMP:20260403T180650
CREATED:20210209T051945Z
LAST-MODIFIED:20210429T233752Z
UID:2957-1620345600-1620431999@cystinosis.org
SUMMARY:Cystinosis Awareness Day - 2021
DESCRIPTION:Welcome to the 4th Annual Cystinosis Awareness Day! \nStarted in 2018\, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. \nSince it’s inception\, Cystinosis Awareness Day has become a highly anticipated event. Each year we uncover ways to promote understanding within our personal networks and beyond. Cystinosis Awareness Day has also proven to be a successful fundraising initiative. \nWe’d appreciate your help this May 7th. Please consider participating in one or more of the ways outlined below. We are small but together we are mighty! \nRaise Funds  \nYour donations fuel educational and support programming and cystinosis research. We are currently funding cystinosis studies over a range of areas. This includes male reproduction\, cognitive function\, measuring the effectiveness of cystine therapy\, and more. Visit our Grants Awarded page to learn more. \nFor the 4th Annual Cystinosis Awareness Day\, your hard earned dollars will go 4x as far. We’ve secured donors ready to match your contribution! For example: a $5 donation turns into $20\, $57 becomes $228\, or $100 translates to $400. Donations will be matched up to $5\,700 (that’s $22\,800 for our community!) Click here to donate. \nShow your love for the Miles for Moose 5.7 mile walk. Moose is a growing little boy with an amazing “nana” who has been putting together this fundraising event in his honor prior to the COVID-19 pandemic. Show your support by registering here. \n \nRaise Awareness  \nLet’s eliminate those misconceptions about cystinosis. This is the time to break the stigmas and bust down any myths you may have encountered. \nMYTH: Cystinosis journeys are all the same. \nMYTH: A kidney transplant will cure cystinosis. \nMYTH: I am defined by my disease. \nIf you are ready to help this myth busting mission\, start sharing today. This can be as small as a conversation with yourself/a loved one or a bit larger like sharing with your network of social media followers using #cystinosisaware. Follow the Cystinosis Research Network for ideas and ways to have your “myth” featured for Cystinosis Awareness Day. (Links to CRN social channels found in the icons at the bottom of the page) \nThe Adult Leadership Advisory Board\, our umbrella group with a membership made entirely of adults living with cystinosis\, has launched a “Succeeding with Cystinosis” campaign for Cystinosis Awareness Day. They’ve challenged the community to search for the successes and failures we’ve experienced within the last year and to share with the group by emailing Sara at shealy194@hotmail.com. \nThank you for continuing to fight for our cystinosis warriors\, this May 7th and every day! \n 
URL:https://cystinosis.org/event/cystinosis-awareness-day-2021/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/02/CAD_2021.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210501T160000
DTEND;TZID=UTC:20210501T170000
DTSTAMP:20260403T180650
CREATED:20210429T031943Z
LAST-MODIFIED:20210514T161523Z
UID:3175-1619884800-1619888400@cystinosis.org
SUMMARY:Cystinosis Session: May Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. \nThe Cystinosis Session is open to all who would like to engage in and/or listen to conversation around the following topics: \n\nCaregivers. What happens when they pass?\nWills\nEmployment\nand More\n\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. \n  \n  \n 
URL:https://cystinosis.org/event/cystinosis-session-may-video-call/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210501
DTEND;VALUE=DATE:20210601
DTSTAMP:20260403T180650
CREATED:20191106T170131Z
LAST-MODIFIED:20210402T011222Z
UID:2174-1619827200-1622505599@cystinosis.org
SUMMARY:Miles for Moose 5.7 Mile Virtual Walk/Run
DESCRIPTION:
URL:https://cystinosis.org/event/miles-for-moose/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/11/Header4b.png
ORGANIZER;CN="Andrea Carr":MAILTO:milesformoose57@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210430
DTEND;VALUE=DATE:20210605
DTSTAMP:20260403T180650
CREATED:20210505T151136Z
LAST-MODIFIED:20210505T151247Z
UID:3181-1619740800-1622851199@cystinosis.org
SUMMARY:CRN at 2021 Virtual PAS
DESCRIPTION:The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering\, delivered virtually in 2021\, offers opportunities for a global audience of physician-scientists\, clinicians\, and educators to share research\, explore new ideas\, build career opportunities\, and collaborate on future projects. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas. Learn more here. \nThanks to our cystinosis advocate volunteers\, we are able to have a voice at this year’s virtual conference. Please visit our booth at https://www.pas-meeting.org
URL:https://cystinosis.org/event/crn-at-2021-virtual-pas/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210410T120000
DTEND;TZID=UTC:20210410T130000
DTSTAMP:20260403T180650
CREATED:20210410T051947Z
LAST-MODIFIED:20210410T051947Z
UID:3158-1618056000-1618059600@cystinosis.org
SUMMARY:Cystinosis Sessions: April Video Call
DESCRIPTION:Cystinosis Sessions: April Video Call \nAll are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday\, April 10th. \nThis “Cystinosis Session” will cover but will not be limited to well being\, employment and relationships. \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-april-video-call/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210306T160000
DTEND;TZID=UTC:20210306T170000
DTSTAMP:20260403T180650
CREATED:20210223T234904Z
LAST-MODIFIED:20210223T234904Z
UID:3018-1615046400-1615050000@cystinosis.org
SUMMARY:Cystinosis Sessions: March Video Call
DESCRIPTION:All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday\, March 6th. \nThis “Cystinosis Session” will focus on the topic of relationships. \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. We hope to see you then!
URL:https://cystinosis.org/event/cystinosis-sessions-march-video-call/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20260403T180650
CREATED:20210209T045540Z
LAST-MODIFIED:20210218T035719Z
UID:2950-1614470400-1614556799@cystinosis.org
SUMMARY:Rare Disease Day 2021
DESCRIPTION:The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud. \nThis theme is our call to action. Let’s elevate our voices as a united rare disease community.\nLeading up to Rare Disease Day on February 28th\, we invite each person impacted by rare disease to share their #RareIn60. \nCreate a 60-second video\,\n60-second photo collage or\n60-word summary of what you’d like others to know about cystinosis/the rare disease that has affected your life. \nYour message can be geared towards friends and family\, colleagues\, students\, health care professionals\, etc. \nTo participate: \n– Create your #RareIn60\n– Post online the week of February 22 (and/or send directly to cjohnstone@cystinosis.org)\n– Use #RareIn60\n– Let us know you’ve joined the campaign! \nRare Disease Day Raffle \nThe Adult Leadership Advisory Board (ALAB) has launched a fundraiser in honor of Rare Disease Day. Every $5 donation received is an entry to win a $100 Amazon gift card and some CRN swag. Enter for your chance to win by selecting “ALAB – Rare Disease Day” from the donate page drop down. The winner will be drawn on March 1. Good luck!
URL:https://cystinosis.org/event/rare-disease-day-2021/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/02/Twitter-Banner-1500x500-1.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210203T200000
DTEND;TZID=UTC:20210203T203000
DTSTAMP:20260403T180650
CREATED:20210112T212608Z
LAST-MODIFIED:20210209T180831Z
UID:2908-1612382400-1612384200@cystinosis.org
SUMMARY:Cystaran Town Hall: Product Shortage 2021 Expectations
DESCRIPTION:Leadiant Biosciences\, the distributor of CYSTARAN\, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is invited to attend the event where the following topics will be addressed: \n\nCystaran shortage updates\nNext steps and what to anticipate\nImportant contact information\nQuestions from the community\n\nRegistration is open here until the event begins\, however\, questions for the Leadiant panel must be submitted by January 25th. \nUpdate: The CYSTARAN Town Hall recording is now available.
URL:https://cystinosis.org/event/cystaran-town-hall-product-shortage-2021-expectations/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2021/01/cystaran_townhall.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210102T160000
DTEND;TZID=UTC:20210102T173000
DTSTAMP:20260403T180650
CREATED:20201230T155550Z
LAST-MODIFIED:20201230T155550Z
UID:2897-1609603200-1609608600@cystinosis.org
SUMMARY:Cystinosis Sessions: January Video Call
DESCRIPTION:All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session will touch on the battles and victories associated with cystinosis. Everyone is welcome. \nTopics include but are not limited to: \n\nDifficulties coping during COVID and school\nTension between parents\, siblings and children\nALAB experiences with parental relationships\n\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. We hope to see you then! \n 
URL:https://cystinosis.org/event/cystinosis-sessions-january-video-call/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201205T120000
DTEND;TZID=UTC:20201205T133000
DTSTAMP:20260403T180650
CREATED:20201208T032935Z
LAST-MODIFIED:20201208T032935Z
UID:2847-1607169600-1607175000@cystinosis.org
SUMMARY:Cystinosis Sessions:
DESCRIPTION:Saturday\, December 5th at 12:00 pm ET\, the Adult Leadership Advisory Board (ALAB) will host a live video conference. This month’s topics include the holidays\, COVID-19 and eye drops. \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/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201107T160000
DTEND;TZID=America/New_York:20201107T170000
DTSTAMP:20260403T180650
CREATED:20201101T230444Z
LAST-MODIFIED:20201101T230600Z
UID:2800-1604764800-1604768400@cystinosis.org
SUMMARY:Cystinosis Sessions: Diet & Nutrition
DESCRIPTION:Join the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday\, November 7th at 4:00 pm ET. The session will focus on \n\nDiet\nNutrition\nRegional food favorites\n\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-diet-nutrition/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20201101T110000
DTEND;TZID=America/Halifax:20201101T150000
DTSTAMP:20260403T180650
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20201102
DTSTAMP:20260403T180650
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=UTC:20201014T190000
DTEND;TZID=UTC:20201014T203000
DTSTAMP:20260403T180650
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;TZID=UTC:20201006T190000
DTEND;TZID=UTC:20201006T203000
DTSTAMP:20260403T180650
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:20201003T120000
DTEND;TZID=UTC:20201003T133000
DTSTAMP:20260403T180650
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:20200929T190000
DTEND;TZID=UTC:20200929T203000
DTSTAMP:20260403T180650
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:20200919T170000
DTEND;TZID=UTC:20200919T183000
DTSTAMP:20260403T180650
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:20200905T160000
DTEND;TZID=UTC:20200905T173000
DTSTAMP:20260403T180650
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;VALUE=DATE:20200822
DTEND;VALUE=DATE:20200823
DTSTAMP:20260403T180650
CREATED:20200806T065610Z
LAST-MODIFIED:20200807T034601Z
UID:2499-1598054400-1598140799@cystinosis.org
SUMMARY:Podcast: Youth to Adult Transition (part 2)
DESCRIPTION:Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis \nPart two of the youth to adult transition discussion is focused on personal experiences of adults living with cystinosis. Joining our panel on behalf of the adult community are Serena Scott (via mum Sue Scott)\, Kevin McCalla\, Ashley Abedini\, and Joe Rumney. \nHosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy\, Sara Healy\, Steve Schleuder\, Cheryl Simoens. \nPlease check back. Link to podcast coming soon.
URL:https://cystinosis.org/event/podcast-youth-to-adult-transition-part-2/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200815
DTEND;VALUE=DATE:20200816
DTSTAMP:20260403T180650
CREATED:20200806T065341Z
LAST-MODIFIED:20200814T184450Z
UID:2496-1597449600-1597535999@cystinosis.org
SUMMARY:Podcast: Youth to Adult Transition (part 1)
DESCRIPTION:Youth to Adult Transition Part 1- Discussion with Medical Professionals \nThe third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children’s Hospital and Stanford University of Medicine and Dori Rivera\, PAM (Patient Access Manager) from Horizon Therapeutics. \nHosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy\, Sara Healy\, Steve Schleuder\, Cheryl Simoens. \nBeginning August 15\,2020 at 9am ET\, this link will go live and connect you to the podcast via YouTube: https://youtu.be/zEMdQmxR0UU. \nThank you for your interest.
URL:https://cystinosis.org/event/podcast-youth-to-adult-transition-part-1/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200801T120000
DTEND;TZID=UTC:20200801T133000
DTSTAMP:20260403T180650
CREATED:20200729T053416Z
LAST-MODIFIED:20200729T053416Z
UID:2490-1596283200-1596288600@cystinosis.org
SUMMARY:Cystinosis Sessions: Exercise
DESCRIPTION:The Cystinosis Sessions live video series continues on Saturday\, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership Advisory Board (ALAB) will lead the discussion open to all community members. \nCystinosis Sessions: Exercise \n\nImportance of exercise\nTypes of exercise\n\nStrength training\nAerobics\nStretching\nBalance training\nModerate vs Intense exercise\n\n\nAnd more\n\nPlease download the Zoom app prior to the meeting. \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786\nClick on the above and have the Meeting ID ready\, if you use the link provided\, the meeting ID is not needed.
URL:https://cystinosis.org/event/cystinosis-sessions-exercise/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
END:VCALENDAR