Announcements

Art Exhibit Deadline Extended to March 1

The Cystinosis Research Network is hard at work on a brand new project for our worldwide community! “Dream, Achieve, Inspire” is an art exhibit that will debut at the 2015 CRN Family Conference in July in Chicago. All patients with Cystinosis are invited to contribute their art including paint, drawing, photography, sculpture, poetry, jewelry, music or fabric art of any kind. Our goal is to have every country affected by Cystinosis represented. All works of art will be used in the exhibit.

We are looking for art from all ability levels from professional artists to children’s art. We want as many artists with Cystinosis as possible. Only artists WITH Cystinosis will be included. Our goal is to showcase the amazing talent in our community as well as raise awareness about Cystinosis through art from around the world.

This will be a TRAVELING exhibit. After its debut in Chicago, “Dream, Achieve, Inspire” will be able to travel to any Cystinosis gathering in the world. This collection will belong to the entire community. All efforts will be made to get the exhibit to any Cystinosis organization requesting a visit.

All art must reach me March 1, 2015. Each contribution will be catalogued and added to the Exhibit. I will need the name of the artist as well as contact information and a short biography to go on display. Please include a picture of the artist as well. This promises to be a breathtaking and emotional tribute to our very unique community. Please consider being a part of our artistic love letter to Cystinosis patients around the world!

CRN proud to sponsor the KDIGO

CRN was proud to sponsor the KDIGO (Kidney Disease Improving Global Outcomes) Controversies Conference on Nephropathic Cystinosis, held December 11-13 in Lisbon, Portugal.  Christy Greeley, CRN Executive Director, attended as CRN and patient advocacy representive, participating in the Adolescent Issues workgroup.  KDIGO is an international organization whose mission is to improve the care and outcomes of kidney disease patients worldwide by promoting coordination, collaboration, and integration of initiatives to develop and implement clinical practice guidelines.  Periodically, KDIGO hosts conferences on topics of importance to patients with kidney disease.

This conference brought together approximately 50 experts from all over the world to deliberate on the current state of evidence surrounding cystinosis treatment and diagnosis.  The focus was on both adult and pediatric cystinosis, and also dealt with the transition from pediatric to adult care.  Patient views and concerns were a major part of the discussion.  A final conference report summarizing the proceedings and deliberations will be published in a peer-reviewed journal.

Christy Greeley with representatives of Cystinosis Mexico, Maryan and Victor Gomex and Dr. Leticia Belmont.

Christy Greeley with representatives of Cystinosis Mexico, Maryan and Victor Gomex and Dr. Leticia Belmont.

IMG 1609

Christy Greeley with Maya Doyle and Dr. Rick and Phyllis Kaskel, CRN Advisory Board Members from Montefiore Hospital in the Bronx, NY.

 

2014 Fall/Winter Newsletter Released

The CRN 2013 Fall/Winter edition of the newsletter, The Cystinosis Advocate, is available now. Please go to the News/Newsletter link to view it.

Questions for the Cystinosis Community

Hello!
The Education and Awareness committee is seeking input from the Cystinosis community about our focus over the next few years to best meet the needs of our community. Your input to the following questions would be greatly valued as we plan for the future.

  1. What needs do you have or see, that the Education and Awareness Committee could address over the next few years?
  2. What ideas do you have about the direction the Education and Awareness committee should take over the next few years?
  3. Would you be interested in participating in a mentoring program if CRN developed one matching adults with cystinosis with adolescents or parents of older patients with parents of those newly diagnosed.
  4. Any other ideas or thoughts to share?

Please direct responses to: Terri Schleuder, VP Education & Awareness
This email address is being protected from spambots. You need JavaScript enabled to view it.

Traveling Art Exhibit Letter

To the Worldwide Cystinosis Community,

The Cystinosis Research Network is hard at work on a brand new project for our worldwide community! “Dream, Achieve, Inspire” is an art exhibit that will debut at the 2015 CRN Family Conference in July in Chicago. All patients with Cystinosis are invited to contribute their art including paint, drawing, photography, sculpture, poetry, jewelry, music or fabric art of any kind. Our goal is to have every country affected by Cystinosis represented. All works of art will be used in the exhibit.

We are looking for art from all ability levels from professional artists to children’s art. We want as many artists with Cystinosis as possible. Only artists WITH Cystinosis will be included. Our goal is to showcase the amazing talent in our community as well as raise awareness about Cystinosis through art from around the world.

This will be a TRAVELING exhibit. After its debut in Chicago, “Dream, Achieve, Inspire” will be able to travel to any Cystinosis gathering in the world. This collection will belong to the entire community. All efforts will be made to get the exhibit to any Cystinosis organization requesting a visit.

All art must reach me February 1, 2015. Each contribution will be catalogued and added to the Exhibit. I will need the name of the artist as well as contact information and a short biography to go on display. Please include a picture of the artist as well. This promises to be a breathtaking and emotional tribute to our very unique community. Please consider being a part of our artistic love letter to Cystinosis patients around the world!

Most Sincerely,
Katie Larimore
This email address is being protected from spambots. You need JavaScript enabled to view it.
Cell: (803) 873-2128
232 Fair Ridge Lane
Blythewood, South Carolina
29016
USA

2014 CRN Scholarship Recipients

The Cystinosis Research Network is pleased to announce the recipients of our 2014 CRN Scholarships. This year, we did not receive any applications for the Individual with Cystinosis Academic Scholarship, so we were able to award two CRN Sierra Woodward Sibling Scholarships. Congratulations to Caroline Larimore and Jack Wyman. We are very proud of both of you and wish you the very best as you pursue your academic, and personal goals.

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