Hope Is Here: A Breakthrough Moment for the IgG4-RD Community
A Historic Day for the IgG4-RD Community
On April 4, 2025, the IgG4ward! Foundation hosted a powerful Fireside Chat to mark a historic milestone: the FDA approval of Uplizna® (Inebilizumab) — the first treatment developed specifically for IgG4-related disease (IgG4-RD).
The IgG4ward! community gathered virtually to reflect on this groundbreaking moment. For many, it was more than just an approval—it was a validation, visibility and hope.
A First for IgG4-RD: FDA Approves Treatment
Dr. John Stone shared the exciting announcement: On April 3, 2025, the FDA officially approved Uplizna® (Inebilizumab) for treatment of IgG4-RD. This approval followed results from the Mitigate Trial, which showed:
A significant reduction in disease flares
A sharp drop in B-cell activity and IgG4 levels
Better long-term disease control than prednisone alone
“It's not simply taking another medication that has been used for other indications,” Dr. Stone said. “But it has been studied intentionally in this disease and been shown quite overwhelmingly to be effective.”
What It Means for Patients and Caregivers
“My husband's disease has been validated by the FDA. And there's now a treatment that has been researched specifically for this disease.”
— Katharine Provencher
Katharine Provencher, caregiver and the Director of Patient Advocacy at IgG4ward!, reflects on what the approval meant to her family,
For patients who have gone years without answers and caregivers who have struggled to explain the diagnosis, this moment was deeply personal.
William Joy: A Pioneer in IgG4-RD Treatment
One of the most moving parts of the webinar was hearing from William Joy—the first person living with IgG4-RD to receive B-cell depletion therapy for IgG4-RD.
His story spans several decades and includes:
Misdiagnosis, including cancer, Sjögren's syndrome
Heavy use of steroids with difficult side effects
Countless doctors and surgeries
Finally finding the right treatment in 2008
After receiving the B cell depletion therapy, Mr. Joy’s symptoms decreased dramatically, his inflammation subsided, and he entered remission.
"I got my life back. No ifs, ands, or buts about it." - William Joy
Separated by more than a century, united by similar symptoms. On the right, a patient photographed in the late 1800s with what we now understand to be IgG4-RD. On the left William Joy—a modern face of the disease. The resemblance is uncanny, but the difference is profound: today, William’s voice, story, and hope shine through.
A Historic Setting: The Ether Dome
The interview with William Joy was filmed in the historic Ether Dome at Massachusetts General Hospital—the same place where surgical anesthesia was first used in 1846 “It felt fitting” said Dr. Stone, “to share a story that represents another turning point in medicine.”
Looking Ahead: More Progress, More HOPE
“My experience is that once progress starts to happen in a disease, the pace of progress really picks up.” – Dr. John Stone
“We now have a community where people can turn to when they find out they have this disease, so they don’t feel so isolated.” – Katharine Provencher
With more research underway, growing clinical awareness and a growing community, the path 4ward is filled with promise. Together, we are changing the story of IgG4-RD.
Watch the Full Webinar Replay
Relive the full Hope Is Here Fireside Chat, including:
The FDA announcement of Uplizna® approval
Clinical trial results explained in plain terms
William Joy’s impactful story
Community updates and upcoming events
Watch William Joy’s Full Interview
Want to hear more from Mr. Joy?
Watch the uninterrupted one-on-one interview filmed inside the Ether Dome — a story of resilience, discovery and what it means to be the first.
Join the IgG4ward! Online Community
Together, we are building awareness, advocating for better care and supporting each other. Most importantly—we are moving IgG4ward!
