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May 2020

Live Video Conference: Dependence, Education & Employment

May 2 @ 4:00 pm - 5:30 pm

Join the LIVE video conference session on May 2nd!

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Podcast Discussion: Coping with Loss & Grief

May 7

Tune into the ALAB's Podcast series as we discuss how to cope with loss and grief.

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June 2020

Cystinosis Sessions: Overcoming Limitations & Goal Setting

June 6 @ 12:00 pm - 1:30 pm

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 or laptop computer Ensure reliable internet connection Download Zoom Cloud Meetings here or through your device’s app store Click on the link https://zoom.us/j/2663523786 Have the Meeting ID ready:…

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July 2020

Cystinosis Sessions: Mental Health

July 11 @ 4:00 pm - 5:30 pm

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, laptop or mobile device (PC, Apple, Android) Reliable internet Download Zoom Cloud Meetings Here or your devices app store Click on the above and have…

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August 2020

Cystinosis Sessions: Exercise

August 1 @ 12:00 pm - 1:30 pm

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 Zoom app prior to the meeting. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Click on the above and have the Meeting ID ready,…

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September 2020

Cystinosis Sessions: Open Discussion

September 5 @ 4:00 pm - 5:30 pm

Join us for an open discussion on Saturday, September 5th!

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Cystinosis Basics: Virtual Meetups

September 29 @ 7:00 pm - 8:30 pm

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!

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October 2020

Cystinosis Sessions: Alternative Therapies, Exercise & Activities

October 3 @ 12:00 pm - 1:30 pm

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 completing these steps prior to the call. Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer Ensure reliable internet connection Download…

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Cystinosis & Mental Health: Virtual Meetup

October 6 @ 7:00 pm - 8:30 pm

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.

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Cystinosis Gene Therapy & Research Updates: Virtual Meetup

October 14 @ 7:00 pm - 8:30 pm

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.

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