Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS The 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 […]
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 […]
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. We hope to see you there! To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions […]
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. Calls are held quarterly - we hope you are able to join us! To […]
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 […]
The Adult Leadership Advisory Board introduces the topic of Family Planning with Cystinosis to their monthly meetup series. Are 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 […]
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). For the Zoom link, please register for free using this link. Event is May 19 at 7p ET. We hope to see you […]
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. Registration is free to attend the event on July 29 at 3pm ET/2pm CT.
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. Special guest is Kerry Heckman, a licensed therapist from Seattle, Washington. Register here to take part in the discussion.