Podcast Discussion: Coping with Loss & Grief
Tune into the ALAB's Podcast series as we discuss how to cope with loss and grief.
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Gatherings/Conferences
Cystinosis Sessions: Overcoming Limitations & Goal Setting
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: Facing challenges Peer pressure Limitations & how to overcome them Goal setting Downloading Zoom/Video Conference Prep Secure access to a mobile device (PC, Apple, Android), desktop […]
Cystinosis Sessions: Mental Health
The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression, and Coping. Our featured guest is Maya Doyle, MSW, PhD, LCSW. We look forward to seeing you at 4pm ET on July 11th. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Zoom Meetings Instructions Desktop, […]
Cystinosis Sessions: Exercise
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. Cystinosis Sessions: Exercise Importance of exercise Types of exercise Strength training Aerobics Stretching Balance training Moderate vs Intense exercise And more Please download the […]
Cystinosis Sessions: Open Discussion
Join us for an open discussion on Saturday, September 5th!
Cystinosis Basics: Virtual Meetups
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. FREE welcome kits - limited availability. We hope you can join us!
Cystinosis Sessions: Alternative Therapies, Exercise & Activities
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. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. We recommend […]
Cystinosis & Mental Health: Virtual Meetup
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. Register today at https://us02web.zoom.us/webinar/register/WN_Gw1Wxj3oQkCi00OpR2WFPQ. Welcome kits are here - with limited availability.
Cystinosis Gene Therapy & Research Updates: Virtual Meetup
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. Register today to reserve your space at https://us02web.zoom.us/webinar/register/WN_PQZeGL2GT5W1MythBHbDzA. FREE welcome kits are here - availability is limited.
Cystinosis Sessions: Diet & Nutrition
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 Diet Nutrition Regional food favorites 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 […]