Castleman Disease Collaborative Network

Today is the last day to register for our Satellite Summit in Phoenix, AZ — the final summit of the year!

Join us for an unforgettable opportunity to connect with fellow patients, loved ones, physicians, and researchers as we come together to learn, share, and strengthen our community.

Don't miss your last chance to be part of it by registering before the day is over!

Register today: https://forms.gle/U3RNuwzJtniHrEvD8

Congratulations to our 2026 Warrior Award winners presented at our annual Patient and Loved One Summit in Philadelphia! 🏆

Patient of the Year: Frances Roof
Frances embodies everything it means to be a warrior. Through pregnancies, treatments, and every uncertainty this disease brings, she's shown up, not just for herself, but for the entire Castleman community. She's contributed samples and data to research, served as a Warrior Ambassador, and has a gift for making other patients feel seen and supported the moment they meet her. Her strength is quiet, but it speaks volumes.

Loved One of the Year: Caitlin Fajgenbaum
For years, Caitlin has stood beside David, her husband and our founder, without wavering through every part of his Castleman disease journey. That steadiness carries into everything else she does for this community too, from her tireless work behind the Quest for a Cure Gala to the countless families she's quietly supported along the way. She has always put patients and loved ones first, and she is the definition of this award: someone who gives everything to support others.

Thank you to both of you for the strength, generosity, and heart you bring to this community every single day. We are so lucky to have you as part of our CDCN family. 💙

We are thrilled to announce the speakers for our first ever Satellite Patient & Loved One Summit happening in Phoenix, AZ on October 11-12! 🎉

We'll be bringing together an incredible lineup of Castleman disease experts and advocates who truly get it, with some joining us right there in the room and others connecting virtually from across the country.

If you've been on the fence about attending in person, let this be your sign. 🙌 Registration is still open at www.cdcn.org/summit and we would love to have you with us.

A huge thank you to our incredible sponsor, Recordati Rare Disease, for making the 2026 CDCN Patient & Loved One Summit in Philadelphia possible! 💙

Year after year, Recordati's unwavering commitment to the Castleman disease community helps us bring patients, loved ones, and physicians together in a way that truly changes lives. We couldn't do this without you.

Some of the strongest, most wonderful people we know spent three days together in Philly for our annual Patient and Loved One Summit. 💙

For a little while, no one had to explain what it's like to live with, or love someone with a rare disease.

Thank you to everyone who made the trip to be there. Already looking forward to our next Summit in Phoenix! ✨

Can't make it to the 2026 Patient and Loved One Summit but still have questions for our experts?

You can still submit your questions using the link below to be discussed during the panel session using the link below. Each session will be recorded and posted on our website to watch back after the Summit.

Submit your questions here: https://forms.gle/mzEH4DR2TjfqWr1P7

Today is World Castleman Disease Day and we want to see EVERYONE flex! 💪 Whether you're a Warrior, a caregiver, a doctor, or a friend of the cause, strike your best Warrior Flex pose and post it with and tag !

Every flex helps show the world that Castleman Warriors are strong, resilient, and never alone.

10 days to go! 🎉 We are counting down to the 2026 Patient and Loved One Summitand the energy is building. Get ready for powerful conversations, inspiring guest speakers, and a community that shows up for each other.

Can't make it in person? No problem — you can still register to attend virtually!

📅 July 30 – August 1, 2026
🔗 Register here: cdcn.org/annual-events/patient-and-loved-one-summit/

We can't wait to see you there. 💙

Gary thought it was the flu.

Within three days of getting sick, he was on life support. Ventilator. Feeding tube. Dialysis. Every organ in his body was shutting down. His family fought to transfer him to a bigger hospital, where doctors kept him alive in an induced coma for two more weeks as they searched for answers.

Then one physician read about a doctor who had survived five near-deadly flares of a rare disease called Castleman disease and had found a repurposed drug that put him into durable remission. That doctor was Dr. David Fajgenbaum and Gary was flown to Penn.

The road ahead was challenging. The only FDA-approved drug for iMCD failed and Gary went into a second coma. The medications keeping his vital organs alive were cutting off blood flow to his hands and feet. The hands he had relied on as a carpenter his entire life.

Slowly, a repurposed chemotherapy drug began to work and Gary stabilized. He re-learned to walk. He pieced his life back together, one day at a time.

This year, he rode 50 miles for Team Castleman for the second time, something he never imagined he would do again.

He can't do carpentry anymore. But he writes now. He calls it repurposing, too.

"My life is really good now. I feel it much more, and better. Like life in Hi-Def." — Gary

None of this happens without the CDCN. The research, the connections, the treatment that finally worked. Your support built that. And it is still building.

World Castleman Disease Day is three days away. Join us on July 23 and help make sure stories like Gary's are not rare exceptions, but the rule. If his story moves you, please donate. Every dollar goes directly to research toward a cure.

cdcn.org/join-the-fight/donate/?projectCode=WCD26&segmentCode=WO0626SM12