The CDCN is an incredible organization that works together as a family to welcome and support those who are struggling with Castleman's Disease. The first thing that the oncologist said after my diagnosis of iMCD was to join the CDCN. I have had the pleasure and privilege of meeting Dr. Fajgenbaum and other indispensable members of the CDCN. They are tireless in their determination to help others and to find a cure for this rare disease. I had never seen or experienced such a level of care for each and every warrior. I am so grateful for the CDCN.
The Castleman Disease Collaborative Network (CDCN) has been a life-changing organization for my family and me. I discovered the CDCN in its early stages after my daughter, Katie, was diagnosed with Castleman Disease before she was even 2 years old. It was an incredibly frightening and isolating time, but Dr. David Fajgenbaum and the CDCN gave us hope. Dr. Fajgenbaum not only advocated tirelessly for Katie to find the right treatment but also became like family to us during our journey.
Over the past 10+ years, I have had the privilege of fighting alongside Dr. Fajgenbaum and advocating for other patients and families who are facing the same battle we did over a decade ago. Katie is alive and thriving today because of the incredible work the CDCN does every day—advancing research, providing critical support, and saving lives.
Without the CDCN, their dedicated team, and the unwavering commitment of everyone involved, Katie and so many others would not be here today or enjoy the quality of life they have. The CDCN is more than an organization; it’s a lifeline for patients and families, and I am forever grateful for their mission and the impact they continue to make and even more grateful that I am able to continue to advocate for this organization.
We were introduced to the CDCN when our 13 year old son was hospitalized and diagnosed with idiopathic multi-centric Castleman Disease with TAFRO syndrome. This is a rare and severe disease that many doctors are unfamiliar with and unsure how to treat. Our son's organs were shutting down when he was diagnosed but the doctors at Children's Hospital of Philadelphia contact the CDCN for advice and a treatment plan was quickly put into place. Founder of the CDCN, Dr. David Fagjenbaum, visited us on the day Joey was diagnosed and shared that he has the same condition as Joey, even the same subtype. He answered all of our questions and gave us hope that Joey would live a normal life with proper treatment. 6 years later, we have stayed connected with the CDCN and have watched countless other people receive life-saving care as a result of the CDCN's research and hard work. We are so fortunate to have them in our lives!
I love the Castleman Disease Collaborative Network (CDCN).
First of all, the co-founder, David C. Fajgenbaum, has ICMD. Then he really understand the issues, the gravity of the situation. This doctor and his team are intrinsically and dedicatedly driven to find a cure for Castleman disease patients and to help to save their life all around the world..
He did it to me, in Canada.
I received the CDCN contact from an on-call hematologist in the emergency room when he knew I had Castleman disease. I kept it to share it during my future appointment with my hematologic oncologist.
But I haven't had time to talk to my hemato-oncologist before the relapse.
I relapse during summer 2021. I was on the first-line treatment (Siltuximab). My condition was in freefalling and hematologic oncologist arrived to his limit.
My lungs were attacked and my liver was failing.
A nurse prepared me for the possibility of a transplant. I was not ready to deal with it and I ask the doctor to call the CDCN.
He wrote a mail to Dr Fajgenbaum, which ask some results from labs. Then, Dr David proposed a treatment more appropriate to my needs and physiological characteristics. My treatment was quickly modified under his advice. Since then, I have been and still am in remission.
Secondly, the CDCN brings us together once every three months. These web meetings keep us informed of research progress. We can also ask questions and we have precise answers. They also create a support network for us.
Thank you for everything you do to help us stay alive and have a more normal life.