CRN 2009 Family Conference

City: Atlanta, GA
Location: Marriott Evergreen Conference Resort
Date: 16 Jul
More information:

 

Agenda  

Speaker List

Poster Session Participants

 

The 2009 Cystinosis Research Network (CRN) Family Conference was held July 16-18 at Stone Mountain Park just outside Atlanta, Georgia.   With over 300 family members, physicians, researchers and volunteers in attendance, this year’s conference was our best ever!  Included in these attendance numbers were 14 families who had never attended a family conference before.  For those who have attended conferences in the past, you know how invaluable the family conferences are to building and strengthening professional and family relationships.  These relationships are vital to us all as we navigate through the cystinosis journey!

The conference theme “Above & Beyond” was exhibited throughout the conference by our speakers, professionals and volunteers who all went the extra mile to ensure the conference experience was a positive one for all.  Most notably, CRN recognized two very special individuals with “Above & Beyond” Achievement Awards.  We are proud to honor Dr. Bill Gahl and Dr. Jess Thoene for their extraordinary and on-going efforts to improve the lives of everyone in the cystinosis community.  We are grateful to have these two unique individuals engaged in our mission.

For the 2009 conference, CRN engaged the services of a production company to provide us with photos and a professional video.  The photos are available in our photo gallery.   The video can be viewed at http://www.youtube.com/watch?v=9tdUa_1mc5Y.

Prior to the conference, the CRN Scientific Review Board met to review the currently submitted grant proposals.  The Cystinosis Research Network is committed to supporting and advocating research to achieve its vision of improved treatments and ultimately a cure for cystinosis.  The CRN Executive Board reviewed the recommendations of the Scientific Review Board and made the decision to fund three additional grants.  This brings CRN’s current commitment for research grants in progress to over $650,000.  

 

Power Point Presentations from the Conference

Cystinosis Research Network: Your Advocacy Group

Cystinosis Research Network - Research Update

Newborn Screening Study at NIH

Development of a Cysteamine ophthalmic in situ Gelling System

Method for Determining Cystine in Leukocytes by High Performance Liquid Chromatography

Successful treatment of the murine model of cystinosis using bone marrow cell transplanatation

Cystinosis Tissue Repository

Cystinosis Research Foundation

National Organization for Rare Disorders

Envisioning Transitioning

Conference Video

Conference Video on YouTube