Announcements

New Medical Advisory Board Member Announced

The Cystinosis Research Network is proud to announce a new addition to our Medical Advisory Board -- Patrick Gipson, M.D., Clinical Assistant Professor of Internal Medicine & Pediatrics, Division of Nephrology at the University of Michigan Medical Center. Dr. Gipson is board certified in both pediatric and adult nephrology and specializes in genetic kidney diseases and clinical research. We are thrilled to add his expertise to our advisory board, especially in light of our recent efforts in transitioning topics.

2015 Family Conference Announced

The CRN Board is busy planning the 2015 Family Conference, to take place July 16-18 at the Doubletree by Hilton – Magnificent Mile hotel in Chicago, IL. This year’s theme is “Winds of Change” – our community is growing, our needs our evolving, and this conference will address the questions and concerns held by all of our members from diagnosis through the constantly changing demands and concerns of adults living with this disease.

Save the date information will be mailed in the next few weeks. Registration material to be available soon after on the CRN website and mailed to homes. We look forward to seeing everyone in Chicago this summer!

cystinosis-conference-2015

Charity Golf Event Supporting Cystinosis Research Network

Save the Date! June 6th2015 at 9 AM.

Thanksgiving Point Golf Course Lehi Utah

Cystinosis is working with me now to build a web page to register for the event.

If you are interested in Sponsorships please let me know and I will reach out to you personally.

Thank you for your continued support and I’ll see you in June!

Tim Miller

robinson-charity-golf-event

Cystinosis community member Rebekah Palmer authors, “A Letter to My Friend”

A Letter to My Friend

A book written for teenagers, by a teenager. If you are a young person not quite on your own, in college or a young adult, this book was written with you in mind. The truths expressed inside will help you on your journey to becoming an adult who makes wise and Spirit-led decisions and who takes on your Christian responsibility for those around you.

As I grew up in church, surrounded by Christianity, certain issues began to burn in my heart. All of the issues mentioned in this booklet are situations I felt convicted about in my own life. I found that if I cooperate with God it’s a lot easier to find my purpose in life.

In this book, you will discover helpful insights into topics such as:

  • Who has God-given authority and are they really for my protection?
  • How can I avoid the trap of peer pressure and the deception of beauty and appearances?
  • What is my purpose in life?
  • How can I discern when I am ready for love?
  • How can I find who I’m really meant to be?

About the Author

Rebekah Palmer graduated in 2010 from Providence Baptist College in Elgin, Illinois, with a degree in secondary Christian education. She is currently enrolled as a creative writing student at the University of Wisconsin-Eau Claire. She is excited about the path that God has placed her on and continues to share the truth and love He places on her heart with those with whom she comes in contact.

If you are looking for great Christian books for teen girls/boys, bible lessons for teenagers, or teen dating advice, you will find this book useful. This Christian book is periodically offered as a free kindle download.

"Train up a child in the way he should go; even when he is old, he will not depart from it.” Pr. 22:6 (The Jubilee Bible)

KEYWORDS/PROPOSED: Christian book, peer pressure, my purpose in life, teen dating advice, Christian books for teen girls, bible lessons for teenagers, train up a child

Letter to My Friend Front Cover

Letter to My Friend Back Cover

 

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.

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