Spring 2025 Edition

It was 2014 when Penny Deremer developed severe flu-like symptoms that would eventually lead to her Castleman disease diagnosis in 2015. In retrospect, she realizes she may have been experiencing symptoms as early as 2004, involving two surgeries to remove and biopsy her lymph nodes. The results had been inconclusive.

At age 52, Penny developed debilitating symptoms, including nausea and such extreme fatigue that she recalls clearing off a shelf in CVS to nap on while she awaited a prescription. One morning, she awoke with a softball-size lump on the side of her neck. Multiple biopsies, eventually sent to a specialty lab in Florida, revealed a definitive diagnosis of Castleman disease.

Penny’s doctors had never heard of Castleman disease before. It was in the early years of the CDCN, and Penny’s online research led to Dr. David Fajgenbaum. She called him directly and said, “I think I have your disease.” Upon hearing she resided near Philadelphia, David asked, “How soon can you get to my office?”

Penny tried and failed several treatment options, including various medications and surgical removal of the majority of lymph nodes from the left side of her neck. The symptoms remained.

“I kept telling David I was neither UCD nor MCD, I didn’t fit into either box,” says Penny. “He said, ‘I know.’”

It was her persistence that led to the CDCN’s discovery of the new OligoCD subtype, announced earlier this year. Penny is now the only patient on a treatment called obinutuzimab, which she receives intravenously every eight weeks. At age 62, she is finally stable and fully enjoying life.

Penny is integrally involved with the CDCN — attending every meeting and special event, donating blood and tissue samples, sharing her medical records, and serving as a Warrior Ambassador. In 2024, she received our Patient of the Year Award.

Penny and “her honey” Rock live in Fairless Hills, Pennsylvania. Between the two of them, they share three daughters and six grandchildren, with whom they cherish spending time. The couple’s numerous interests include travel, dining at new restaurants, fishing, gardening, and rooting for the Phillies and the Eagles.

Luke Chen, MD, FRCPC, MMEd, is a dedicated physician, researcher and professor based in Halifax, Nova Scotia. His focus is on rare diseases, particularly Castleman disease, as well as hemophagocytic lymphohistiocytosis (HLH) and IgG4-related disease — both of which intersect closely with CD.

As a clinical hematologist, Dr. Chen sees CD patients across Canada and consults with physicians around the world. His numerous academic roles include Professor of Medicine at Dalhousie University and Affiliate Professor at the University of British Columbia. He is currently developing a Coastal Program for Rare Inflammatory Disease to serve as a resource for all Canadians with rare blood disorders and the healthcare professionals who treat them.

“I’m trained as an educator, and my greatest passion is teaching the next generation of physicians,” explains Dr. Chen. “But along the way, I started seeing a lot of patients with rare diseases, who remained undiagnosed after seeing multiple specialists. It ignited another passion for how we can deal with diagnostic mysteries — how we can identify diagnoses and more importantly, find useful treatments. My students and residents were interested in doing research, and everything just grew from there.”

Dr. Chen is deeply engaged with the CDCN, often discussing his patient cases with David to determine the most effective treatment plans, and serving as a guest presenter at our quarterly Virtual Community Gatherings for patients and loved ones. In recognition of his commitment to patients, Dr. Chen was presented with the CDCN Physician of the Year Award in 2024.

“There’s a quote from Frederick Buechner,” shares Dr. Chen. “He said, ‘The place where God calls you to is the place where your deep gladness and the world’s deep hunger meet.’ It brings me joy to make diagnoses with rare diseases and find treatments that come off the shelf that we can repurpose. There is a deep need for that — a deep hunger.”

When he is not focused on medicine, Dr. Chen enjoys spending time with his wife and four children, all of whom play soccer, so they spend much of their time at the soccer field. At home, the family loves a good game of pick-up basketball.

The CD community is incredibly fortunate to have Dr. Chen in our corner!

Defining a New Subtype of Castleman Disease

Annual Quest for a Cure Casts a Magical Evening to Benefit the CDCN

Patient Profile

Featured Supporter

Physician-Scientist Leader

Research Updates

Highlights

Mark Your Calendar

Join The Fight

Contribute Medical Data to the ACCELERATE Natural History Registry

Donate Samples for Research through CastleBank

Support High-Impact Research with Financial Contributions and Planned Gifts