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October 2020

Cystinosis & Mental Health: Virtual Meetup

October 6, 2020 @ 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, 2020 @ 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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November 2020

LLLFF Virtual 5K

November 1, 2020

On the one year anniversary of Laura McGinnis’ passing, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life in pursuit of adventure, making memories every step of the way. We'd like to keep her spirit alive by fulfilling as many "fun" requests for the cystinosis community as possible. To grow our funding, we are hosting a virtual 5k on November 1, 2020. We invite friends, family, and anyone who has been touched by her story and/or cystinosis to take…

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Mulligans Fore Morgan

November 1, 2020 @ 11:00 am - 3:00 pm
5820 Rockside Woods Blvd N, 5820 Rockside Woods Blvd N
Independence, OH 44131 United States
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Join us for our first Mulligans Fore Morgan event at TopGolf in Cleveland on Sunday, November 1st at 11:00 AM. Registration is $75 per player for 3 hours of unlimited play. Each golf bay will hold teams of 6.  An “All-American” lunch is included. Guests will pay individually for alcoholic beverages.   2020 has brought Morgan Peachman a new kidney, and a new lease on life. After turning 13 this summer, and hitting her six month kidney-versary last month, she’s…

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Cystinosis Sessions: Diet & Nutrition

November 7, 2020 @ 4:00 pm - 5:00 pm

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

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December 2020

Cystinosis Sessions:

December 5, 2020 @ 12:00 pm - 1:30 pm

Saturday, December 5th at 12:00 pm ET, the Adult Leadership Advisory Board (ALAB) will host a live video conference. This month's topics include the holidays, COVID-19 and eye drops. 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 Zoom Cloud Meetings here or through your device’s app…

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January 2021

Cystinosis Sessions: January Video Call

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

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 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…

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February 2021

Cystaran Town Hall: Product Shortage 2021 Expectations

February 3 @ 8:00 pm - 8:30 pm

Leadiant Biosciences, the distributor of CYSTARAN, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is invited to attend the event where the following topics will be addressed: Cystaran shortage updates Next steps and what to anticipate Important contact information Questions from the community Registration is open here until the event begins, however, questions for the Leadiant panel must be submitted by January 25th. Update: The CYSTARAN Town Hall recording is now available.

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Rare Disease Day 2021

February 28

The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. This year's Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud. This theme is our call to action. Let’s elevate our voices as a united rare disease community. Leading up to Rare Disease Day on February 28th, we invite each person impacted by rare disease to share their #RareIn60. Create a 60-second video, 60-second…

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March 2021

Cystinosis Sessions: March Video Call

March 6 @ 4:00 pm - 5:00 pm

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 call. 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…

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