The Castleman Disease Collaborative Network is pleased to give out Castleman Warrior Awards annually to a Castleman disease patient, loved one, community member, researcher, and physician that has made the greatest impact on the lives of people with Castleman disease. The winners, who have all made an impact on the lives of patients with Castleman disease through either research, patient care, support, advocacy, awareness, or fundraising, embody the values of the Castleman Disease Collaborative Network of "patient focus, innovation, collaboration, impact with urgency, diversity, and commitment to people."
2018 Warrior Awards
Jim Johnston Castleman 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. It was very special to talk to someone who really knew what I was going through. Later, after I had a major life-threatening relapse, Raj 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
Loved One of the Year: Patty Prazenica
“Patty first learned about Castleman disease because she is my mother-in-law. She first encountered Castleman disease when I was initially 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
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
Researcher(s) of the Year: Chris 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
2017 Warrior Awards
Jim Johnston Castleman Patient of the Year: Ryan Hoke. Ryan joined the CDCN and Warrior team 2 years ago and brought such enthusiasm and spirit to the team. He is extremely dedicated to finding a cure and is always willing to donate as many samples as needed. Ryan is one of 3 patients who are on an experimental treatment so his willingness to provide samples to the CDCN for research is very valuable. Ryan is an asset to the CDCN and Warrior team and we are extremely proud of him and all of his dedication to the cause.
Loved One of the Year: BJ Campbell. BJ and his wife Marcy came to the summit for the first time last year and left feeling empowered and set on a mission to do as much as they can to help raise funds and awareness for the CDCN. Within two weeks of the summit BJ joined the warrior team and began working hard to plan and execute two very successful events in his hometown. His passion and dedication to finding a cure for his wife and so many others played a vital role in his success in raising over $20,000 which was donated to research. This donation was the largest donation made by a single warrior team member this year.
Community Member of the Year: Mary Zuccato. Mary is the Managing Director of Development. She is passionate about raising awareness of Castleman disease, connecting patients and loved ones, and fundraising to support groundbreaking research by the CDCN. Her dedication has no limits, as she often conducts her team calls while running on her treadmill during her lunch break at Vanguard. Since Mary has joined the team, the CDCN has grown from a small research effort into a major funder of research. The first two years the CDCN raised and invested $120K for research, but since she took over in year 3 it was over $350K and 600K in year 4. She is always focused on what is best for patients and thinking through ways to overcome hurdles between where we are now and a cure. Mary has spent a great deal of her personal and professional time dedicated to helping individuals with Castleman disease. She is an amazing example of everything that embodies the values of the CDCN!
Physician of the Year: Dr. Thomas Uldrick. Dr. Uldrick, from the National Cancer Institute at the NIH, is a superb physician, who treats a large number of CD patients. His nomination came from a patient of his who shared that "Dr. Uldrick is extremely meticulous in his review of every clinical and laboratory abnormality. No stone is left unturned. Guided by data, he is open to taking novel approaches to treating the various subtypes of Castleman disease. In addition to his superb clinical care, Dr. Uldrick is a source of empathy during our most difficult times." Dr. Uldrick is also a scientific authority on Castleman disease. He serves on the CDCN's Scientific Advisory Board and is the Chair of the ACCELERATE Patient Research Study's Certification & Access Subcommittee.
Researcher(s) of the Year: Kojo Elenitoba & Megan Lim. Drs. Elenitoba-Johnson and Megan Lim served as the joint senior authors for the first-ever diagnostic criteria of idiopathic MCD, which was published in the top hematology journal in the world, Blood. Working in partnership with Dr. Fajgenbaum, Drs. Elenitoba-Johnson and Megan Lim spent countless hours reviewing through over 100 CD cases and collaborating with 32 physicians and researchers from 8 countries on 5 continents that came to Penn to establish the diagnostic criteria. This criteria is being used around the world to speed up the time to diagnose and treat iMCD. Dr. Megan Lim also leads the Penn Department of Hematopathology, which reviews slides from potential CD cases. Dr. Elenitoba-Johnson has recently launched a genomic sequencing study with support from the CDCN and samples from CD patients around the world. Dr. Elenitoba-Johnson and Lim also serve on the CDCN Scientific Advisory Board and on the ACCELERATE Steering Committee and Certification & Access Subcommittee, respectively.
2016 Warrior Awards
Jim Johnson Castleman Warrior of the Year: Gary Gravina, the patient that has made the greatest in the lives of CD patients and in the fight against Castleman disease in 2016! This award was presented by Dr. Jason Ruth, the CDCN’s Chief Scientific Officer, who shared his thoughts about Gary at the Quest for a Cure Gala:
“Patients are the reason CDCN exists, and they are what drives our organization forward, which is why it's so important to recognize Gary, a patient who has meant so much to his family, friends, and CDCN team. Seeing him intubated in the ICU reminded us of how aggressive CD is, how fragile life is. New discoveries we made using his tissue samples, generously contributed while in ICU, gave us important insights into CD and reminded us of how strong we are when we work together and that is how we will overcome CD.”
Loved One of the Year: Mileva Repasky. This award was presented by Dr. David Fajgenbaum, Co-founder and Executive Director of the CDCN, who was honored to present the award to Mileva:
“Mileva is the ultimate loved one. She is an incredible mother, advocate, wife, Warrior, and friend. Mileva has taken such great care of her daughter Katie, who battles Castleman disease. She has been a source of so much strength to other patients within the CD community. She has done an incredible job as the Director of the Castleman Warrior program. Castleman’s picked the wrong patient when it struck Katie, because the Repasky’s are fighting back and they’re gonna make Castleman disease pay!”
Community Member of the Year: Mary Guilfoyle. Mary is a Senior Director and Compound Development Team Leader for Janssen Pharmaceuticals. Mary, along with many other colleagues at Janssen, has been an incredible partner in advancing research and care for Castleman disease patients. Mary and her team have gone above and beyond the call of duty to fund and partner on 3 major studies as well as supporting our patient summit today and annual meeting at ASH. Two of these studies were done on samples that were left over from a previous study and could have just stayed on the shelf, but Mary wouldn’t allow that. She wanted these samples to be put to use to help patients. Dr Fajgenbaum shared that as soon as he learned that Mary was the winner of this award, he immediately thought of something she has said on several conference calls: “We want to make the decision that is best for patients. David, what is best for patients?”
Physician of the Year: Dr Frits van Rhee. Dr. van Rhee, a Professor of Medicine in the Myeloma Institute at UAMS, has been a leader in the field for over a decade and treats over 100 patients with CD. He was the Principal Investigator of the clinical trial that led to the only FDA-approved treatment for Castleman disease. Dr Fajgenbaum was honored to award Dr van Rhee, who is his own Castleman disease physician:
“As his patient, I can say that he has saved my life 3 times. He has also been the most caring and compassionate physician that I have ever come across in all my years, and I know all of his patients feel the same way.”
Researcher of the Year: Dr. Alexander Fossa. A hematologist at the University of Oslo, Dr. Fossa is the ultimate example of a collaborator. Despite having a small practice in Oslo, Dr Fossa went above and beyond to scavenge through records from Castleman disease patients across Norway to identify samples for several important CDCN studies over the course of 2016. Specifically, he provided over 20 precious samples for HUNT I, HUNT II, and SPEED II. These samples are game changing and Dr Alexander Fossa will go down in history as the collaborator who contributed the most samples to the research that changes things for CD.
2015 Warrior Awards
Jim Johnston Castleman Warrior Award: Kim Driscoll. Kim is the mother of a pediatric Castleman disease patient, Elyse, who died in 2014. Kim has continued her daughter’s fight against Castleman disease in various ways and has been one of our most active volunteers. Click here to read Elyse's story, see more about the Driscoll's "Roar for a Cure" Motorcyle Ride, or to donate!
2014 Warrior Awards
In 2014, the CDCN presented the inaugural "Jim Johnston Castleman Warrior Award" to Jim Johnston as a tribute to all of the time and energy he has dedicated to advancing the cause and patient care over the years. This will become an annual award given to other deserving Warriors!