10/8/2018 The 2018 Patient and Loved One Summit was a hit! The fifth annual summit took place on September 21-22, 2018 at the University of Pennsylvania and brought together over 90 patients, loved ones, and CDCN volunteers and staff from around the world. Summit participants were treated to a full day of educational and enjoyable content with lectures on the most up-to-date Castleman disease information, new research, and ways to fight back. Patients and loved ones were able to connect with one another over shared meals and via a small group breakout session dedicated to sharing their Castleman disease stories. Guest speakers included a host of clinicians and researchers that are expert in Castleman disease including:
- Fritz van Rhee, MD, PhD, University of Arkansas for Medical Sciences
- Eric Oksenhendler, Prof, Hôpital Saint-Louis and Université Paris-Diderot, Paris
- Wilbur Bowne, MD, FACS, Drexel University College of Medicine
- Wenbin Xiao, MD, PhD, Memorial Sloan Kettering Cancer Center
- Minji Byun, PhD, Icahn School of Medicine at Mount Sinai
- Helen Partridge, MD, Perelman School of Medicine at the University of Pennsylvania
On the second day of the summit, patients, loved ones, and CDCN members were able to hang out, relax, eat food, and enjoy each other’s company on a beautiful day at Spruce Harbor Street Park.
2018 Castleman Warrior Award Winners
Castleman Warrior Patient of the Year: Raj Jayanthan, MD
“I first heard about this patient from a doctor who reached out to me. The doctor told me that he had learned about a patient, Raj, who was also a medical student and very ill with iMCD, and suggested that Raj and I should connect once Raj was feeling better. I had only met a few other Castleman disease patients at that point–the first time I had a chance to talk with Raj on the phone, we talked for over 2 hours! It was very special to talk to someone who really knew what I was going through. When I later had a major relapse and nearly died, Raj and I stayed in touch. After I recovered, Raj reached out almost immediately and said he wanted to help and do whatever he could to help fight Castleman disease. He decided to take 6 months off of medical school and put his life completely on hold to study Castleman disease. During that time, he laid the groundwork of the ACCELERATE Patient Research Study. He figured out the best study design so that we could pull together thousands of data points from hundreds of patients. In addition, he and his friends and family raised all of the funds for the SPEED-1 proteomics study that looked at thousands of proteins to pinpoint cytokines and proteins that may play a role in Castleman disease. He continues to be involved in this fight in a million ways; I am proud to call him my friend, and I am so happy to award him the Castleman Warrior Patient of the Year award.”– David Fajgenbaum, MD
Castleman Warrior Loved One of the Year: Patty Prazenica
“This next award is going to a really special person. Patty first learned about Castleman disease because she is my mother-in-law. She first encountered Castleman disease when I was first diagnosed, and she saw first-hand the challenges that I went through as a patient. It was an incredibly difficult time for our whole family. When I was finally feeling better and wanted to start the CDCN, she told me that she would love to help in any way she could. She felt that she could help make an impact by coordinating volunteers and through supporting patients. Before Patty, we were all hyper-focused on the science. While we tried to help patients when we could, there was no infrastructure in place to do this. Patty made a position for herself as Community Coordinator to help support patients and their loved ones. She was the leader in transforming the CDCN from a research organization that tries to help patients to being an organization that helps patients through research. We could not have accomplished even close to what we have accomplished without the work that she has done. She continues to help lead up Quest for a Cure and is involved in a million ways. She is an amazing grandmother and I am honored to present her as the Castleman Warrior Loved One of the Year.”– David Fajgenbaum, MD
Castleman Warrior Physician of the Year: Eric Oksenhendler, Prof
“My first introduction Dr. Oksenhendler was through a really scary journal article that I read of his….luckily, our relationship has gotten better since then. More recently, he started a Castleman disease center in Paris, France. I had an opportunity to go there with Shiela to see the opening of the center a few months ago, and I was so impressed to see the enthusiasm and energy they are putting into Castleman Disease there, all through Eric’s leadership. He has a really great team around him. He has historically made a huge impact on the disease and is really pushing things forward right now. It is my privilege to welcome and honor Dr. Oksenhendler as this year’s Physician of the Year.” – David Fajgenbaum, MD
Castleman Warrior Researchers of the Year: Christopher Nabel, MD, PhD and Ian Lipkin, MD
“…Chris is a hematology fellow at the Dana Farber Cancer Institute and has a long history with Castleman disease. When I decided to start the CDCN in 2012, I sent out an email to my classmates in medical school. I heard back from only a handful of people, but the first person I heard back from was Chris Nabel. We got together in August 2012, and we hashed out what was already known about Castleman disease and what still needed to be studied to further the fight against Castleman disease. Since then, he has co-authored a number of papers on Castleman disease, and was the lead investigator on the important HUNT study that showed that Castleman disease is not caused by a virus. In addition, Dr. Ian Lipkin, a world-leading expert on viral discovery, was the principal investigator of the HUNT study. I am excited to be present them with this year’s Castleman Warrior Researcher of the Year awards.” – David Fajgenbaum, MD
