2010 - Audited Financial Statements
	2010 - 990 Form
	2009 - 990 Form
	2008 - 990 Form
	2007 Annual Report
	2007 - 990 Form

We are pleased to present the first annual report for the Cystinosis Research Network (CRN). Founded in 1996, CRN’s vision is the discovery of improved treatments and a cure for cystinosis. 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 funds research and programs primarily through donations from the public, grassroots fundraising events, and grants. 2007 was a year of great growth and accomplishment for CRN. We successfully transitioned new leadership for the organization on the Executive Committee and further expanded membership on the Board of Directors, Scientific Review Board, and Medical and Professional Advisory Committees. Key initiatives and program expansion took place in all major areas of concentration: Education and Awareness, Family Support, Research, and Development. Highlights of the year included:

Education and Awareness
CRN raised awareness and reinforced strong relationships at three professional conferences which are very important to cystinosis: The University of Miami Pediatric Seminar (March), The American Society of Pediatric Nephrology meeting (May), and The American Society of Nephrology meeting (November).

CRN continued to strengthen its affiliation with the National Organization for Rare Disorders (NORD) by attending the NORD Tribute Banquet in May honoring CRN Scientific Review Board Chairman Dr. William Gahl with the Public Health Leadership Award and NORD’s retirement event honoring Abbey Meyers in October.

CRN reformatted and expanded the information available on our comprehensive website and published two editions of our newsletter, which is distributed to over 2,000 families, donors, and cystinosis professionals.

Three $1,000 educational scholarships were awarded, two to individuals with cystinosis and one to a sibling of an affected individual.

Family Support
The 2007 Family Conference, “Searching for a Cure…Deep in the Heart of Texas”, took place July 19-21 in San Antonio, Texas. This was our largest conference to date as over 300 people attended and took advantage of the opportunity to become better informed, access medical professionals, and network. Individuals with cystinosis, families, and cystinosis clinicians and researchers from around the world were able to interact and share information in order to further their understanding of the disease. Future conference sites were announced, including 2009 in Atlanta, Georgia and 2011 in the San Francisco Bay Area.

CRN continued its support of newly diagnosed and existing families through a variety of avenues including access to world experts in cystinosis via our advisory boards, moderation of an email support group and provision of information packets to families and professionals.

Research
CRN announced the establishment and funding of a three year Cystinosis Fellowship at the National Institutes of Health under the direction of Dr. William Gahl. This will be the first community funded fellowship which will focus on clinical as well as research training in cystinosis, filling a crucial need in our community.

CRN was designated as the lead non-profit organization for the International Pediatric Nephrology Association (IPNA) 15th Congress, August 29 – September 2, 2010, to be held in New York City under the direction of CRN Scientific Review Board member Dr. Frederick Kaskel.

The 2007 Call for Research Proposals and subsequent Scientific Review Board review and recommendations resulted in funding for two new studies, for a total current research commitment of $750,000 for eight studies:

“Early Intervention Trial for Visual Processing Deficit in Cystinosis” Doris Trauner, M.D., University of California, San Diego, La Jolla, CA August 2003 – Ongoing, Award amount: $112,724

“Development and in vivo testing of novel therapies for cystinosis” Corinne Antignac, M.D., Ph.D., Vasiliki Kalatzis, Ph.D., Hôpital Necker-Enfants Malades, Paris, France, Grant Timeline: October 2005 – September 2007, Award Amount: $50,000

“Design and Synthesis of Novel Prodrugs for the Treatment of Cystinosis” Donald Cairns, Ph.D., School of Pharmacy, The Robert Gordon University, Aberdeen, Scotland, Grant Timeline: Ocotober 2005 – September 2008, Award Amount: $97,928

“Tissue Repository for Cystinosis” Jess G. Thoene, M.D., University of Michigan Medical Center, Ann Arbor, MI Grant Timeline: Fall 2006 – Ongoing, Award Amount: $26, 206

“Study of ATP metabolism in human cystinotic proximal tubular cells and in humans with cystinosis in vivo”, Elena Levtchenko, M.D., Ph.D., University Medical Center Nijmegen, The Netherlands, Grant Timeline: January 2007 – December 2007, Award Amount: $68,090

“Development of a cysteamine in situ gelling system for the topical treatment of corneal crystals in cystinosis”, Dr. C. Tuleu, University of London, School of Pharmacy, Dr. Olufemi Rabiu, Guy’s & St. Thomas’ NHS Foundation Hospital, Mr. Ken K. Nischal, Mr. Rajnish Sekhri, and Dr. William Van’t Hoff, Great Ormond Street Hospital and Institute of Child Health Grant Timeline: Fall 2006-Fall 2009, Award Amount: ₤ 103,000 (approximately $203,500)

“Gene transfer studies for cystinosis” Vasiliki Kalatzis, Ph.D., Eric J. Kremer, Ph.D., Institut Genetique Moleculaire de Montpellier, France, Grant Timeline: Fall 2007 – Fall 2009, Award Amount € 75,900 (approximately $101,000)

“Evaluation of Novel Prodrugs for the Treatment of Nephropathic Cystinosis” Professor Donald Cairns, Dr Rachel M Knott, Dr Graeme Kay Grant Timeline: Fall 2007 - Fall 2008, Award Amount: ₤ 35,000 (approximately $70,000)
 

Development
CRN raised nearly half a million dollars in 2007 through the extraordinary generosity of many families and individuals. Funding was received from a variety of sources, including individual donations, grassroots fundraisers (sporting events, letter campaigns, family fun days, themed events, dinner dances, home business donations, etc.), CRN sponsored programs, and corporate and government grants. Of special note, The Harry A. and Margaret D. Towsley Foundation awarded CRN a matching grant in the amount of $150,000 dedicated to the newly established NIH Cystinosis Fellowship. CRN had a landmark year in many respects in 2007. Please accept our profound gratitude for all of those whose generosity of financial gifts, time and spirit made all of this possible. We thank you and look forward to your continuing support.

Sincerely,
Christy Greeley
President and Executive Director
Cystinosis Research Network, Inc.