Who Are We?

JannThe Cystinuria Support Network is was founded in 1992 by Jann Ledbetter, a mum with two daughter with cystinuria. When her daughters were first diagnosed, Jann looked for additional information about cystinuria and some kind of support network. What she needed more than anything else, was to be able to speak with someone who understood what her family was experiencing. Unfortunately, due to the rarity of the disease, Jann was unable to find anyone with first hand experience to talk to. She was finally put in touch with other people with cystinuria through the networking services of the National Organization for Rare Disorders (NORD) and the Research Trust for Metabolic Diseases in Children (RTMDC). She found the services invaluable.

Jann decided to set up her own support group, the Cystinuria Support Network in 1994. The first newsletter was published in 1995. It was a combination of articles written by professionals in the field of urology and nephrology, and was followed by two more newsletters in 1997 and 1998.

At first all communication was by letter. Each member had a full list of the postal addresses of other members. In 1997 an email group was set up – initially each email address had to be entered by hand but in 1998 the Swenson family set up the Listserv email group which enabled members to email to one email address. That email would then be forwarded to everyone else on the list. This group was revolutionary for the CSN. For the first time, people were able to talk in relative security, to many other people. For many people this would be the first time they had shared their experience with other people who had the same experience and understood their feelings and fears.

With the popularity in the Internet growing, contacting other members of the CSN became easier. In 1998 the CSN purchased http://www.cystinuria.com and the first website was uploaded by Peter Ollerenshaw, a UK member of the CSN. For a long time it was the only website specifically for cystinuria in humans and is now in the top five hits for cystinuria on Google.

In 2004 a decision was made to try and make the CSN a self funding organization, in order to ensure its sustainability. Although over the years members have been more than willing to fund the CSN, the financial burden of cystinuria can be immense, especially for the members in the US without medical insurance.  The Listserv was moved to the free Yahoo! Groups, and we were able to get free hosting for the website.  Over 500 members belong to the Yahoo group, and it remains a vital source of information for people with cystinuria.

As times have moved on most of the chatter these days is on the Facebook groups.  There are several, all full of wonderful people and although the membership is closed to stop spammers, membership is quickly approved.

The website was redesigned and moved to cystinuria.net in 2016 which felt like a better fit for the Cystinuria Support Network.  Hosting the site on WordPress reduces costs and fits in with the Networks sustainability aims.