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. Topics include but are not limited to: Difficulties coping during COVID and school Tension between parents, siblings and children ALAB experiences with parental […]
All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March 6th. This "Cystinosis Session" will focus on the topic of relationships. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the […]
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. The Cystinosis Session is open to all who would like to engage in and/or listen to conversation around the following topics: Caregivers. What happens when they pass? Wills Employment and More Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: […]
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. The 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. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 […]
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS The conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18, 2021). To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. […]
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. TOPICS ALAB members will lead a discussion about the CRN Virtual Conference (held July 16-18, 2021). To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help […]
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. Please note: this is not just for adults living with cystinosis, everyone interested is […]
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. Please note: this is not just for adults living with cystinosis, everyone interested is invited to attend. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are […]
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, […]
Test your knowledge of everything Halloween. ALAB members are hosting a free, online trivia night. October 29th at 8:30pm ET Jump 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. We hope to […]