A few things...

[Matt Lewis]

Hi all,
Just a few misc notes -
First, thank you so much to everyone who participates in these forums. I have watched this community develop over the past 7+ years, and i can't tell you how happy it makes me to see the growth that we have. The information in these pages is invaluable - better than any single resource we could ever hope to put together.

Second, i want to remind everyone that although the ICF is a bonafide 501(c)3 nonprofit public charity - although we are a "business" in that sense - we are never far away. If anyone in the community has ideas, questions, concerns - i encourage you to use the "ICF Roundtable (http://www.cystinuria.org/forums/forumdisplay.php?f=15)" forum. Share those thoughts with us. If you want to see a particular educational resource, chances are that we can do that. If you think this website would look better in red - we can do that. Nothing is too small - we exist for the benefit of the cystinuric community. So please do not hesitate to get in touch with us - to ask, write, comment, discuss.

Ok, that's it for now. Look for a new face on the ICF website - coming soon. We are always working!
Wishing everyone a wonderful (belated) new year.
matt

[ClairesMom]

Just want to take a moment and say Thank You for helping so many of us. Keep up the great resources. Gayle

[trejjj]

first some history i have staghorn cystine kidney crystals (stones that are not stone but crystals) I am 33 years of age and had my first crystal at age 5 and i was told that it was impossible to have a 4 mm stone in the shape of a S at age 5 because they rarely even see stones this size in males over age 50 i have developed stones at an unbelievable rate ever since. I got pill bottles full of passed crystals and am now disabled soley from the pain and inconvience . This site has been more hepful then some doctors. (years of being a liar because they krystals dont show up on x-ray) if you have cystine stones this is the place to come to find all the things the that we (the people expereciencing it) have come to try to figure out what to do doctors say you cant feel inside your kidneys and the proof and info on this site seem quite to the be quite the oppisite. please feel free to join our place and at the very least have someone who understands how you feel to talk to > keep your head up and know you may be affected but lifes not at an end I have passed over 300 stones in my life and am approaching 100 surgeries of all sorts I am Rare case some people have 1 2 or 3 in a lifetime I am a medical freak and those words have been used at least a time or to . thanx for the outlet >>>