Letter from CRN's President

Dear Friends and Family,

The holiday season is always an exciting period. Celebrating all of the blessings bestowed upon us individually and collectively. We have a spring in our step as we go about making preparations for the holidays. A most important action our family does is to reach out to those less fortunate. We look for opportunities to support worthy organizations not only financially but in action as well. We do this with a sense of responsibility. We do this to show our children the importance of kindness and caring for others. It is in this spirit we respectfully request you to consider The Cystinosis Research Network
(CRN) in your holiday gift giving.

CRN is an all-volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance, and educating the public and medical communities about cystinosis. CRN’s vision is ultimately the discovery of a cure, the development of improved treatments to enhance the quality of life for those living with cystinosis.

Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to
accumulate in various organs of the body. Without specific treatment, children living with
Cystinosis have a  significantly compromised life span and quality of life.

Thankfully, advances and successes continue to be made: children are living longer, pursuing higher education, entering into marriage and pursuing professional careers. Throughout it all though, what remains consistent in their lives is the knowledge this disease has significant control over their very existence. Imagine taking in excess of 50 pills on a daily basis; imagine knowing that kidney transplants are inevitable; imagine living with the knowledge your lifespan is abbreviated. How do you respond to a comment such as this...”Dad, I have to live my life on an accelerated basis because I will not live as long as you”.

Every day we hold onto the hope that one day there will be a cure. Until then, we continue to fight. Advocating for medical research to identify new treatments to improve and prolong their lives. It is in this spirit we ask you to honor friends and loved ones with a donation https://cystinosis.org/how-to-help/donate. Your gift will enable CRN to continue to positively impact and assist individuals and families afflicted with this rare disease. With these thoughtful gifts, you will not only make a lasting impact on people that are in need but you will also be positively advancing research; more importantly, you will be giving hope.

Our 2017 Fall/Winter Newsletter provides numerous examples of how your support would be used: http://bit.ly/2B48pcK. Read the ASN article to learn of how we heighten medical service providers understanding of this rare disorder (page 28). Read about our 2017 CRN Family Conference to get insights as to challenges our families face and how we learn and support each other (page 1). Read about how Eddie Langley’s cystinosis journey has inspired our children to grow into responsible, caring and productive individuals (page 20). None of this would be possible without your support.

Best wishes to you and your family for a safe and festive holiday season.

Clinton Moore


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