Introduction Site Co-administrator

[DavidF_NKF]

Hello Everyone, and welcome to the National Kidney Foundation’s C3G Online Community! I’ll be one of your site administrators. Before joining the NKF, I conducted research in cardiovascular and kidney disease for over 30 years. During that time, I developed a passion for learning about kidney disease. More recently, while organizing NKF’s Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on C3G, I became strongly interested in this disease. In fact, this C3G Online Community was created after the EL-PFDD meeting, where many of you voiced the need for improved interactions among people living with C3G. In addition to a secure forum where C3G patients and care-partners can communicate, lots of information on living with chronic kidney disease (i.e., C3G) is available here. As we proceed, we will update the “Learn More About C3G” portion of the site with additional C3G-specific information. We are just getting started!

[linfuller Ambassador]

Hello, David! I'm interested in the research you were involved in. Did you pursue any specific interests within those diseases?

[DavidF_NKF Partner in reply to linfuller]

Hi Lindsey- I'm so sorry i missed your post! Thanks for asking about my previous life in research. I first became interested in kidney disease in graduate school, when I described changes in the kidneys of mice when they were treated with the hormone that stimulates the adrenal glands to produce steroids. Many years later, i joined the pharma sector, where I did research looking for drugs for kidney disease caused by high blood pressure and diabetes. One of those drugs actually reached the market, but it was mainly for high blood pressure. I also was involved in a project on focal segmental glomerulosclerosis (FSGS) and then membranous nephropathy, a complement-mediated disease. That's when i developed an interest in the complement system.

[Dldant in reply to DavidF_NKF]

Hi David,

Have you come across a good way to pinpoint which of the 3 complement pathways is malfunctioning? We are looking for an alternative treatment to prednisone for my husband.

Diagnosed at 22. He is 46 now. We've also tried cellcept no real change. Prednisone has kept him pretty stable for over 20 yrs.

Lookimg for some great insight from this group!!

[linfuller Ambassador in reply to Dldant]

Patients with C3G have alternative pathway dysregulation. The why is what is different for each patient.

[KatrineM Ambassador]

Hi David! What a great initiative with this group. It is such a good idea with more accessible information for families with C3G, and I also very much appreciate the fact that we can communicate on a secure platform. Thank you so much!

[DavidF_NKF Partner in reply to KatrineM]

Hi Katrine, Thank you for your post and please excuse my delayed reply. I am really happy that you are on the site- looking forward to your posts!

[tofflenutmeg]

We'll be looking out for new info you put up, thanks.

[DavidF_NKF Partner in reply to tofflenutmeg]

Hi Tofflenutmeg, Thank you for writing; we are working on a few things. Is there anything specific you would like to learn about?