(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2! Over the last few years, Carter's family has taken a strong interest in monarch butterflies. Post diagnosis, Grandmom (Carrie) knew she wanted to create an event to honor his resilient spirit. To celebrate Carter's second birthday and new found love for […]
The CRN is a proud participant in Giving Tuesday - a global movement encouraging people to "do good." This is our fifth year celebrating the event that has inspired millions to give, collaborate, and celebrate generosity. The Tuesday after U.S. Thanksgiving has been designated as the global day for giving back. It was created in […]
Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This marks the third year we've come together on this day to support education, awareness, research, and fundraising for our rare disease. Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis […]
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!
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 […]