News and Updates Archive
December 23, 2008
2010 Cystinuria Symposium: The ICF Board of Directors will reconvene shortly to discuss and plan the 2010 Symposium. Stay tuned for more information!
December, 2008
On October 5th, 2009, the National Institutes of Health (NIH) announced that they would be expanding the Rare Diseases Clinical Research Network, awarding $117 million among 19 new and existing
consortia. The Consortium for Hereditary Causes of Nephrolithiasis and Kidney Failure (informally known as the Rare Kidney Stone Condortium) was among the new groups, and includes a direct focus on cystinuria research in the form of a patient registry and biospecimen repository. The success of this proposal marks a significant opportunity for cystinuria research advancement. For more information, please read the recent announcement by Dr. David Goldfarb, lead coordinator of the Cystinuria Center. Additionally, please visit the ICF Cystinuria Channel at YouTube to see Dr. David Goldfarb discuss the value and need for a cystinuria registry at the ICF's 2008 symposium in New York.
November, 2008
The Consortium for Hereditary Causes of Nephrolithiasis and Kidney Failure has recently launched its online website dedicated to organizing the cystinuria, primary hyperoxaluria, Dent disease, and APRT deficiency communities. Look for important developments from this group in the near future!
August 10, 2008
Cystinuria in the News: Newly diagnosed cystinuric Nicholas Knabusch, 16, is featured in this Daily Herald report.
April 2, 2008
Online registration is now available for the 2008 ICF Cystinuria Symposium, to be held on Saturday, July 26th, at Saint Vincent's Hospital in New York, NY. Please help the ICF make the appropriate food and space arrangements by registering early!
April 1, 2008
Dr. Stephen Erickson's "Cystone" study at the Mayo Clinic has reached full enrollment! Thank you to all members in the community who are supporting this important clinical research.
November 1, 2007
Mayo Clinic: in need of patients for "Cystone" study
The "Cystone for Cystine Stone Prevention study", ongoing at the Mayo Clinic, is still in need of 3 participants. Please consider helping this research in cystinuria treatment!
October 4, 2007
Cystinuric Patients: Your input is needed!
Dr. David Goldfarb of St. Vincent's Hospital and NYU is conducting an online quality of life survey for cystinuric patients. Please help support cystinuria research and benefit future patient quality of life by participating in this valuable and private survey. [click for more information]
August 23, 2007
The ICF congratulates Casey Casperino for successfully promoting kidney disease awareness and raising more than $1,400 for the National Kidney Foundation of Greater New York. Read the full article at the New York Post!
June 27, 2007
On June 26, the decision was made by the board of directors to not hold a 2007 Cystinuria Symposium in favor of focusing our efforts towards the development of the Foundation. For details on this decision, please read the June 27 entry at the President's Blog. The symposium will be back in 2008, so stay tuned!
June 19, 2007
The ICF is proud to announce its official partnering with the Association pour la Recherche et l'Information sur la Cystinurie (ARIC).
May 18, 2007
The Mayo Clinic "Cystone" study for cystine stone prevention is still recruiting patients. Cystone is an established product that is being tested in cystine and calcium stone formers to study its potential ability to inhibit stone formation. While much of the community is "waiting for an answer", very few patients are signing up to participate. Please remember that the value and success of this study depends on the enrolment of willing cystinuric patients!
May 16, 2007
Please excuse our dust! We are in the final stages of a complete site overhaul that should provide a better context for content updates in development. By the end of the year, expect a fully developed resources section!
2006
October, 17, 2006
Dr. Stephen Erickson of the Mayo Clinic is promoting a "cystone" pilot study testing the use of an herbal medicine for the treatment of cystine stones.
June, 2006
The website has recieved a number of updates, from expanded resources to the addition of donation options. A "Supporters" program will be started soon, and will lead to our largest expansion of resources to date with the inclusion of a number of research articles. Check back for more progress!
June, 14, 2006
Dr. Jay Tischfield or Rutgers University tells the ICF about his recently developed mouse model for cystinuria.
April, 2006
We have recently partnered with GoodSearch (powered by Yahoo!), allowing ICF supporters to contribute to the Foundation simply by searching the internet!
March, 2006
The site has received some much needed attention and updating. We are in the process of building the resources center, so check back for updates soon!
March 30, 2006
We are proud to announce that the IRS has determined the International Cystinuria Foundation to be exempt from Federal income tax under section 501(c)3 of the Internal Revenue Code. Additionally, the IRS has classified the ICF as a public charity. This accomplishment is a giant step towards our goal of putting cystinuria at the forefront of nonprofit focus and better serving the cystinuric community.
2005
November, 2005
DVD sets of the 2005 Cystinuria Symposium have been reformatted and are now available to cystinurics world-wide!
October, 2005
DVD sets of the 2005 Cystinuria Symposium held at St. Vincent's Hospital in New York are now available for purchase! Click for more information.
October 11, 2005
UROCIT-K USERS have been reporting difficulty in obtaining the medication. Dan Crawford, Urological Products Manager for Mission Pharmacal, reports that: "Urocit-K was recently on back order due to mechanical problems in tableting. The FDA was informed and has approved the action that was taken to resolve the matter. Urocit-K 5 and 10 mEq tablets have been released and are available through standard distribution channels (pharmacies and drug wholesalers). If your pharmacist has difficulty obtaining Urocit-K, please ask him to call our Customer Service at (800) 292-7364 and we will be happy to assist him." Thank you Mr. Crawford!
September, 2005
Doctors are talking about the importance of the cystinuric community in organizing and pushing the agenda! Click here to see what they're saying: (link expired )
July 20, 2005
THE NYC CYSTINURIA SYMPOSIUM held on July 16th at Saint Vincents Hospital in Manhattan was a success! Videos of the event will soon be available for purchase. Audio recordings of the presentations will soon be available for download from this site. Watch for updates!
January 3, 2005
THIOLA USERS - As of 1/3/2005, the FDA Center for Drug Evaluation and Research (CDER) and Mission Pharmacal have resolved the shortage of Thiola (tiopronin). Thiola is now available at pharmacies through normal distributaion. Availability of the drug is no longer limited to special lot release by Mission Pharmacal.
2004
January 19, 2004
As usual, maintenance on the forums have received my full attention over the last few months. However, the second part in a two part tutorial on understanding stones and stone prevention is finally finished, along with a link to an excellent source that i foresee becoming a staple both to this website and the cystinuric community as a whole.
2003
May 15, 2003
First, there is a new tutorial available which is composed of two remote tutorials from the National Library of Medicine. Also, some changes have been made to the search function found in the link button column to the left in most pages. Our old non-working "within-website" search has been replaced with a MedicineNet search engine that will search MedicineNet for whatever you ask it to. Note that the search engine in the dictionary page is different from the standard engine in other pages, in that it will search MedicineNet's medical dictionary. Also, tweaking has been made to the forums over the past few days, and things are starting to settle in.
March 19, 2003
We are proud to offer a guest tutorial written by Dr. Erica Suchman, of Colorado State University, on the use of antibiotics and antibiotic resistance. The new tutorial has been added to the list in The Lecture Hall: Rm. 101.
2002
December 9, 2002
I hope everyone had a great Thanksgiving! I'm currently working on a 2nd and much larger tutorial, one that deals lightly with stones and stone prevention. It will be covering sub-topics such as pH as well. I hope to have this done and posted before the 1st of the new year.
November 12, 2002
Recent Publications" replaced with a new section: "Room 101". The first in a series of tutorials, "Amino Acids" is completed and can be found in Rm. 101. Also, the dictionary is now open, although it contains very few words (mostly enough to aid in the comprehension of the Amino Acid tutorial). More to come!
November 11, 2002
Working on the dictionary as well as a new section to replace "Recent Publications". Other misc. minor updates.
October 31, 2002
"Links and Resources" added to; completed for now. Happy Halloween!
October 30, 2002
The "Links and Resources" page is now up and running. More links will be added shortly.
October 29, 2002
Cystinuria.org opens to the public!
October 22, 2002
The vBulletin software for the forums is a success! The boards will remain closed for preparation.
October 17, 2002
Cystinuria.org is founded! The domain is purchased and hosting arrangements are made.