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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;TZID=America/New_York:20200502T160000
DTEND;TZID=America/New_York:20200502T173000
DTSTAMP:20260516T115115
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20200507
DTEND;VALUE=DATE:20200508
DTSTAMP:20260516T115115
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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BEGIN:VEVENT
DTSTART;TZID=UTC:20200801T120000
DTEND;TZID=UTC:20200801T133000
DTSTAMP:20260516T115115
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201107T160000
DTEND;TZID=America/New_York:20201107T170000
DTSTAMP:20260516T115115
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
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220108T160000
DTEND;TZID=UTC:20220108T170000
DTSTAMP:20260516T115115
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:20240519T190000
DTEND;TZID=UTC:20240519T200000
DTSTAMP:20260516T115115
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
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