Fourth Annual Patient and Loved One Summit

On September 15-16, 2017 over 60 patients and their loved ones gathered with members of the CDCN at the University of Pennsylvania in Philadelphia for the Fourth Annual Patient and Loved Ones Summit.

On Friday patients were able to connect with each other, as well as expert physicians and members of the CDCN team. They discussed their own stories, the challenges that they face as Castleman Disease patients, and their shared experiences. David gave an overview of Castleman Disease itself, as well as an update on the CDCN and all of the work we are doing to find a cure - this included research currently being conducted and information on how and why to enroll in research themselves. Dr. Frits van Rhee, who has a great deal of experience with Castleman Disease, gave an in-depth presentation on caring for your or your loved one’s disease. At the end of the day, the Warrior Awards were presented to

Castleman 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 Registry'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.

On Saturday, patients and loved ones were invited on a big bus tour to sightsee and explore Philadelphia from the top of a double-decker bus. Highlights of the tour included Independence Mall and the Art Museum (and Rocky statue)!

Comments

There are no comments yet.

Leave a Comment