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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20201101T060000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240826T180000
DTEND;TZID=UTC:20240826T190000
DTSTAMP:20260512T072253
CREATED:20240819T210516Z
LAST-MODIFIED:20240819T210516Z
UID:4788-1724695200-1724698800@cystinosis.org
SUMMARY:Adults August Meetup
DESCRIPTION:The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month’s topic: Mental Health – Trauma. \nSpecial guest is Kerry Heckman\, a licensed therapist from Seattle\, Washington. Register here to take part in the discussion.
URL:https://cystinosis.org/event/adults-august-meetup/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240729T150000
DTEND;TZID=UTC:20240729T160000
DTSTAMP:20260512T072253
CREATED:20240716T141813Z
LAST-MODIFIED:20240716T141813Z
UID:4772-1722265200-1722268800@cystinosis.org
SUMMARY:Adult July Meetup - Disability and Cystinosis
DESCRIPTION:For Disability Pride Month\, the Adult Leadership Advisory Board is hosting a Zoom call to discuss living with cystinosis and disability. Their special guest is Hannah Creel\, a cystinosis warrior\, advocate and rare disease ally. \nRegistration is free to attend the event on July 29 at 3pm ET/2pm CT.
URL:https://cystinosis.org/event/adult-july-meetup-disability-and-cystinosis/
LOCATION:Virtual
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240519T190000
DTEND;TZID=UTC:20240519T200000
DTSTAMP:20260512T072253
CREATED:20240515T204119Z
LAST-MODIFIED:20240515T204119Z
UID:4763-1716145200-1716148800@cystinosis.org
SUMMARY:Adult May Meetup - Mental Wellness
DESCRIPTION:May is Mental Health Awareness Month. Join the Adult Leadership Advisory Board to discuss the importance of mental wellness. Special guests include AJ Altman (Music Therapist) and Amanda Harmon (PhD college professor).\n\n\n\nFor the Zoom link\, please register for free using this link.\nEvent is May 19 at 7p ET.\n\n\n\nWe hope to see you there!
URL:https://cystinosis.org/event/adult-may-meetup-mental-wellness/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240428T190000
DTEND;TZID=UTC:20240428T200000
DTSTAMP:20260512T072253
CREATED:20240320T175153Z
LAST-MODIFIED:20240417T132804Z
UID:4695-1714330800-1714334400@cystinosis.org
SUMMARY:Family Planning with Cystinosis
DESCRIPTION:  \nThe Adult Leadership Advisory Board introduces the topic of Family Planning with Cystinosis to their monthly meetup series. \nAre you an adult with cystinosis thinking about having a family? Not sure if you want to adopt or pursue a traditional birth? Join the Zoom conversation to hear from adults with cystinosis who can help answer some of your questions. Special guests include Briana Dundon\, Bryan and Alex Stout\, and Emily Mello. \nClick here to complete the simple event registration. Event will be held virtually on April 28th 6pm CT/ 7pm ET.  We hope to see you there! \n 
URL:https://cystinosis.org/event/family-planning-with-cystinosis/
LOCATION:Virtual
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231029T203000
DTEND;TZID=UTC:20231029T213000
DTSTAMP:20260512T072253
CREATED:20231009T153826Z
LAST-MODIFIED:20231009T154754Z
UID:4555-1698611400-1698615000@cystinosis.org
SUMMARY:Halloween Trivia Night
DESCRIPTION:Test your knowledge of everything Halloween. \nALAB members are hosting a free\, online trivia night. \nOctober 29th at 8:30pm ET \nJump on the Zoom call for a chance to win a $25 gift card. Open to teens and adults – use this link at the time of the event; no registration necessary. \nWe hope to see you there!
URL:https://cystinosis.org/event/halloween-trivia-night/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220709T160000
DTEND;TZID=UTC:20220709T170000
DTSTAMP:20260512T072253
CREATED:20220622T222003Z
LAST-MODIFIED:20220622T222003Z
UID:3883-1657382400-1657386000@cystinosis.org
SUMMARY:Cystinosis Sessions: July Video Call
DESCRIPTION:Founding ALAB member\, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday\, July 9 at 4:00pm ET. Agenda items include the AZ study\, open discussion and information on the ALAB’s call for new applicants.  \nCalls are held quarterly – we hope you are able to join us!  \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nNew to 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-2/
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:20220409T160000
DTEND;TZID=UTC:20220409T170000
DTSTAMP:20260512T072253
CREATED:20220310T200251Z
LAST-MODIFIED:20220322T145341Z
UID:3660-1649520000-1649523600@cystinosis.org
SUMMARY:Cystinosis Sessions: April Video Call
DESCRIPTION:Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our Adult Leadership Advisory Board Saturday\, April 9 at 4:00pm ET.  This event is open for all to attend.  \nWe hope to see you there!  \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-april-video-call-2/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220108T160000
DTEND;TZID=UTC:20220108T170000
DTSTAMP:20260512T072253
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:20260512T072253
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:20260512T072253
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:20210807T160000
DTEND;TZID=UTC:20210807T170000
DTSTAMP:20260512T072253
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:20210710T160000
DTEND;TZID=UTC:20210710T170000
DTSTAMP:20260512T072253
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:20260512T072253
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;TZID=UTC:20210501T160000
DTEND;TZID=UTC:20210501T170000
DTSTAMP:20260512T072253
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;TZID=UTC:20210410T120000
DTEND;TZID=UTC:20210410T130000
DTSTAMP:20260512T072253
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:20260512T072253
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:20260512T072253
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:20210102T160000
DTEND;TZID=UTC:20210102T173000
DTSTAMP:20260512T072253
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:20260512T072253
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:20260512T072253
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201003T120000
DTEND;TZID=UTC:20201003T133000
DTSTAMP:20260512T072253
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;VALUE=DATE:20200822
DTEND;VALUE=DATE:20200823
DTSTAMP:20260512T072253
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200815
DTEND;VALUE=DATE:20200816
DTSTAMP:20260512T072253
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200801T120000
DTEND;TZID=UTC:20200801T133000
DTSTAMP:20260512T072253
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
BEGIN:VEVENT
DTSTART;TZID=UTC:20200606T120000
DTEND;TZID=UTC:20200606T133000
DTSTAMP:20260512T072253
CREATED:20200521T050942Z
LAST-MODIFIED:20200521T051344Z
UID:2430-1591444800-1591450200@cystinosis.org
SUMMARY:Cystinosis Sessions: Overcoming Limitations & Goal Setting
DESCRIPTION:The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults living with cystinosis) will host the event. Topics will include: \n\nFacing challenges\nPeer pressure\nLimitations & how to overcome them\nGoal setting\n\nDownloading Zoom/Video Conference Prep \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\nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nAdd the meeting to your calendar by clicking one of the buttons below. We look forward to “seeing” you and hearing you on June 6th!
URL:https://cystinosis.org/event/cystinosis-sessions-overcoming-limitations-goal-setting/
CATEGORIES:Gatherings/Conferences
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200507
DTEND;VALUE=DATE:20200508
DTSTAMP:20260512T072253
CREATED:20200415T000234Z
LAST-MODIFIED:20200415T001744Z
UID:2400-1588809600-1588895999@cystinosis.org
SUMMARY:Podcast Discussion: Coping with Loss & Grief
DESCRIPTION:The next topic in the Adult Leadership Advisory Board’s (ALAB’s) podcast series focuses on coping with loss and grief. This is the second installment of the series – Cystinosis Rare: A Journey into the Unknown. \nThe podcast will be published on YouTube on Cystinosis Awareness Day\, May 7th. \nOur featured guest and episode leader is Maya Doyle.\nPartnering with the cystinosis community for over a decade\, Maya is a professor and certified social worker (CSW) specializing in nephrology. Her unique background and set of experiences will make this a conversation you do not want to miss! \nIn preparation for the podcast recording\, please send any questions for Maya or thoughts you’d like to add by emailing Jana at jana_healy752@hotmail.com. Emails will be accepted through April 15th. Your names will be kept confidential and will not be mentioned during the episode. \nSubscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Thursday\, May 7th. We hope you tune in!
URL:https://cystinosis.org/event/lossgrief/
CATEGORIES:Gatherings/Conferences
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20200502T160000
DTEND;TZID=America/New_York:20200502T173000
DTSTAMP:20260512T072253
CREATED:20200414T234814Z
LAST-MODIFIED:20200414T235101Z
UID:2399-1588435200-1588440600@cystinosis.org
SUMMARY:Live Video Conference: Dependence\, Education & Employment
DESCRIPTION:Join the Cystinosis Sessions video conference series hosted by the Adult Leadership Advisory Board (ALAB). Starting May 2nd at 4:00 pm ET\, the ALAB welcomes anyone impacted by cystinosis. This “session” will focus on: \n\nEducation\nEmployment\nImportance of Being Self-Reliant vs Being Dependent\nEssential Needs & Medication\nGeneral conversation as time allows\n\nTo join the meeting: \nhttps://zoom.us/j/2663523786 \nMeeting ID: 266 352 3786 \nDownloading Zoom/Video Conference Preparation \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.
URL:https://cystinosis.org/event/live-video-conference-dependence-education-employment/
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:20200321T160000
DTEND;TZID=UTC:20200321T173000
DTSTAMP:20260512T072253
CREATED:20200317T212213Z
LAST-MODIFIED:20200319T190233Z
UID:2378-1584806400-1584811800@cystinosis.org
SUMMARY:Cystinosis Sessions: Coronavirus\, Medication
DESCRIPTION:Welcome to Cystinosis Sessions\, a series created by the Adult Leadership Advisory Board (ALAB). These video conferences aim to help adults living with cystinosis and hope to inform stakeholders beyond our patient community about life with this rare disease. \nYou are invited to ALAB’s very first video conference – Saturday\, March 21 at 4pm ET.\nTopic: Medication ***UPDATE*** Given the current Coronavirus/COVID-19 climate\, we are adding time to discuss questions and concerns with the ALAB team and Registered Nurse and mom of 2 with cystinosis: Anna Pruitt. \nBelow you will find a draft agenda and Zoom (video conference provider) log in instructions. Please download Zoom prior to the 4pm ET start time. We hope to see you then! \nDraft Agenda: \n\nCoronavirus/COVID-19\nProcysbi: Advantages & Disadvantages\nMedicine containers\nTravel tips/hospital visits with Procysbi\, Cystagon and/or eyedrops (Cystaran)\nMedication odor tips\nPersonal experiences (time permitting)\n\nDownloading Zoom/Video Conference Prep \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\nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nOne tap mobile\n+16465588656\,\,2663523786# US (New York)\n+16699009128\,\,2663523786# US (San Jose) \nDial by your location\n+1 646 558 8656 US (New York)\n+1 669 900 9128 US (San Jose)\nMeeting ID: 266 352 3786\nFind your local number: https://zoom.us/u/a9v2YRNtU
URL:https://cystinosis.org/event/cystinosis-sessions-medication/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
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END:VCALENDAR