More than 200 patients and loved ones from around the world joined the CDCN in-person and virtually for our 2024 Patient and Loved One Summit! The annual three-day event, held this year in July on the campus of the University of Pennsylvania in Philadelphia, featured informational and coping sessions, research presentations, a Q&A with a panel of Castleman disease experts and opportunities for attendees to connect with one another and a “fun day” picnic lunch at a rooftop park offering stunning views of the city.
We had participants from five countries, including Australia, Canada, Chile and Ireland, and 21 states in the US, including California, Florida and Maine.
One of the highlights of the powerful weekend was giving out Castleman Warrior Awards to two amazing people. The CDCN congratulates Penny DeRemer, who was presented with our Patient of the Year Award, and Joe “Butch” Carleno, who received our Loved One of the Year Award. Both were celebrated during the Summit for their inspiring efforts to support our patient and loved one community in countless meaningful ways.
Thank you to our presenters and panelists, to our event sponsor Recordati, and to everyone who made our 2024 Summit a highly informative and enjoyable gathering for everyone who participated.
Complete recordings of this year’s sessions, including opening and closing remarks are available on the CDCN website.
Madeleine Park was only ten years old when she developed a sudden illness that caused chronic and severe muscle pain, prevented her ability to think clearly, and made her feel “just awful.” Her parents took her from doctor to doctor for evaluation, but an accurate diagnosis remained elusive for two long and difficult years.
“I feel like I missed out on so much during that time,” recalls Madeleine. “I should have been in school like all my friends and everyone else my age. Instead, I spent my days in hospitals. As a middle schooler going through all of this, I just felt so alone, unheard and terrified.”
It was not until Madeleine lost the ability to walk that a full body scan revealed a mass the size of a grapefruit sitting on her heart. Within a matter of days, the mass was surgically removed, with the biopsy revealing unicentric Castleman disease (UCD).
Today, Madeleine is a healthy 17-year-old in her senior year of high school in Windermere, Florida, where she loves reading, spending time with family and friends, and dancing as a member of her school’s dance repertoire company. She has not identified a career path just yet, but she knows it will be about helping others.
This past summer, Madeleine and her brother served as interns at the CDCN, supporting the team on several projects and providing onsite assistance at the 2024 Patient and Loved One Summit. It’s a family affair, as their father is an active member of the CDCN Advisory Council.
“Interning at the CDCN, I’m amazed at the passion of the entire team,” says Madeleine. “I especially loved attending the Summit. I truly felt the community of warriors, and it was incredibly inspiring. We really care about each other, and that’s what makes this so special.”
Hear about Madeleine’s journey to diagnosis in her own voice in this powerful video she created for World Castleman Disease Day 2024.
