2025 Annual Report
197
health access advocates
469
clinicians nationwide
34,034
patients served
600
active volunteers
250
plasma ambassadors
President's letter
Every year, this report gives me a chance to step back and see the full shape of what our community built together. In 2025, that shape was bigger, and more human, than any number can fully capture.
Patients across the country turned to us this year for answers, treatment access, and support, backed by a growing network of health access advocates, clinicians, volunteers, and plasma ambassadors who gave their time and their stories to this cause. Our community also showed up in Washington D.C. and in state capitals across the country helping end harmful copay accumulator practices, a win we intend to build on in the coming years. And through the generosity of donors and the steady stream of people searching for answers on primaryimmune.org, we saw just how many are still looking for this community, often for the first time.
But the numbers only tell part of the story. This year, nearly 100 teens and tweens found lifelong friendships at our largest-ever Teen & Tween Escape. A new self-assessment tool helped people recognize the signs of immune deficiency and start real conversations with their providers. A researcher in Alaska took the first steps toward a screening test that could change outcomes for an entire community. And creators like Ironmouse and CDawgVA brought immune deficiency into conversations it had never reached before.
None of this happened by accident. It happened because donors, volunteers, advocates, and families chose, again and again, to show up for one another. As you read through this report, I hope you feel what I feel: enormous gratitude, and real momentum heading into the years ahead. Thank you for being part of everything on these pages—and everything still to come.
With gratitude,
Jorey Berry
President & CEO
Immune Deficiency Foundation
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
Our leadership team
A team dedicated to turning community momentum into lasting progress for people with immune deficiency. Under President and CEO Jorey Berry, our leaders bring together expertise in patient advocacy, community development, policy reform, and organizational strategy—each helping to meet the moment when families, advocates, and communities show up and build what comes next.
Lynn Albizo, JD
Chief Public Policy Officer
Tammy C. Black, MPA
Chief Communications Officer
Alissa Creamer, MPH
Senior Director of Education
& Community Services
Christopher Duckett, PHR
Director of Human Resources
Brian Lloyd
Chief Technology Officer
Sarah Rose, MBA
Chief Financial Officer
Christopher Scalchunes, MPA
Vice President, Research
Aimee Yrlas Simpson
Chief Development Officer
In 2025, our community showed up in every way that matters—227 legislative meetings, nearly $9.1 million raised, more than 1.8 million visits to primaryimmune.org, and thousands who turned to us to learn, connect, and find support.
But numbers only tell part of the story.
✔ Powered by belonging
For many teens and tweens living with immune deficiency, day-to-day life can mean isolation, managing a condition that few peers understand, and navigating life without the built-in community that comes more easily to other kids. The 2025 Teen & Tween Escape in Cincinnati, Ohio, gave them something different: a space designed so they could be the main character, choosing their own adventure instead of navigating one shaped by medical routine. This year's reimagined Escape drew its largest attendance ever—152 attendees, including 43 families and 53 teens and tweens—each finding, if only for a weekend, a place to simply be kids among others who understood without needing it explained.
"The Teen Escape gave my daughter so much more than a few days of information: she made lifelong friends who finally understand her life of treatments, pain, and not being 'normal.' As her mother, I'm so thankful for the gift you've given my child."
— Parent of a 2025 Teen & Tween Escape attendee
✔ Powered by family
Cannan Caton lives with common variable immune deficiency (CVID), a rare disorder that leaves his immune system unable to defend itself the way it should. Intravenous immunoglobulin (IVIG) therapy, made possible by plasma donors, provides the antibodies his body cannot produce on its own, giving him the protection his body needs to thrive. In 2025, we connected a company that manufactures plasma collection equipment with the Caton family, who are longtime volunteers with our organization. Filmed on their California farm and at one of Cannan's baseball games, their story now helps raise awareness about plasma donation at medical conferences and across social media. More organizations are turning to our Plasma Ambassador and Patient Speaker programs, both of which grew significantly in 2025, to put a human face to the products and services they provide.
✔ Powered by persistence
Copay accumulator and maximizer programs can quietly erase the benefit of copay assistance, leaving patients responsible for their full deductible or out-of-pocket costs before insurance coverage begins. In 2025, patients, advocates, and a coalition of national patient organizations came together under the Immune Deficiency Foundation's leadership to end the practice in Maryland. The effort included securing legal counsel, meeting with legislators, reviewing legislative amendments, and coordinating regularly with coalition partners to keep the legislation moving forward. An advocacy day in Annapolis and testimony throughout the legislative session gave patients a direct voice in the process. The result: a bill signed into law banning copay accumulators statewide making it a win for Maryland patients, and creating momentum for a continued nationwide fight.
The Immune Deficiency Foundation is proud to fund four research projects totaling $200,000 through the 2025 Research Grant Program.
✔ Powered by partnership
Dr. Eric Allenspach didn't set out to study a rare form of immune deficiency in isolation—he set out to serve a community. As an assistant professor at Seattle Children's Hospital, Allenspach discovered a genetic variant causing IFNAR2 deficiency that disproportionately affects Inuit and Alaska Native populations, where roughly one in 25 people are carriers, leaving children vulnerable to life-threatening infections from illnesses as common as the flu. Working directly with Tribal Health community-led groups in Alaska, Allenspach has already begun educating local providers and families—but without broader screening, many children remain undiagnosed. The 2025 Michael Blaese Research Grant will fund his next step: an affordable, community-specific screening test, and early groundwork toward a gene editing strategy that could one day treat the condition at its source.
✔ Powered by connection
Ironmouse, a VTuber living with common variable immune deficiency (CVID), has helped bring unprecedented visibility to immune deficiency through her online platform. Together with fellow creator CDawgVA, she has transformed personal storytelling into a powerful awareness movement, reaching audiences far beyond traditional advocacy channels. In 2025, our organization built on that momentum with a new fundraising toolkit, giving streamers and other community supporters practical tools to educate audiences, raise funds, and expand awareness of immune deficiency.
✔ Powered by answers
Launched in 2025, the immune system self-assessment tool helps people recognize possible signs of immune deficiency and organize information they can share with a healthcare provider. For those who have spent years searching for answers, it turns uncertainty into a more informed and productive conversation.
"I have been trying for many years to understand why my body seemed to struggle significantly more than others. This tool, along with your local provider recommendations, led me to more understanding and a diagnosis. Now I receive treatment that helps my body with daily life. I can work on prevention rather than treating the aftermath. Your site was integral in the process. I am so appreciative!" — From a follow-up survey sent months after using the assessment tool
Progress is only possible because of the people who came before. In 2025, we launched an In Memoriam page to remember community members we've lost and to honor the lives that continue to shape who we are.
Walk and Community Days
Our national walks bring this community together in the most literal sense—steps taken side by side, in cities across the country, by people determined to move this cause forward. In 2025, that meant eight cities and thousands of steps toward lasting support for our community, powered by the generosity of both our walkers and our sponsors.
National sponsors
ADMA Biologics
Amgen
Chiesi USA, Inc.
CSL Behring
CVS Specialty
GC Biopharma
Grifols
Kedrion Biopharma
Octapharma Plasma
Pharming
Pfizer
Takeda
Local sponsors
Accredo Specialty Pharmacy, a part of Evernorth Health Services
Allergy & Asthma Texas Health
Axiva Health Solutions
BioTek ReMEDys
Boston Children's Hospital
Capstone Vital Care
Care Partners Specialty Infusion Pharmacy
Christus Children's Hospital
CSI Pharmacy
Ensoma
InfuCare RX
Invivyd
North Park Subaru
Octapharma
Realo Specialty Care Pharmacy
Sands RX
Show Me State Vital Care
St. Louis Children's Hospital
X-4 Pharmaceuticals
✔ The resources behind the progress
Every story in this report was made possible by the generosity of gifts, large and small, from individuals, sponsors, and partners who believed in this community's progress. Here's a snapshot of how those resources came in, and how they were put to work in 2025.
Revenue
Expenses
For the full breakdown of our 2025 finances, view our complete financial statements.
Powered by expertise
The Immune Deficiency Foundation's Board of Trustees bring diverse expertise to our organizational leadership, helping turn the momentum of our community into pathways for continued impact and growth.
Tracy Shaw, Ph.D.
Board Chair
Seth Kaufman
Vice Chair
Sonia Vohnout
Secretary
Jason Angelos
Interim Finance Committee Chair
Peter Atherton, Ph.D.
Colleen Dansereau, MSN, RN, CPN
Nurse Advisory Committee – Chair
Mark Dzwonczyk
Charlene Grabowski
Adrian Mollo, Esq.
Andy Robins, Esq.
Stella Safo, M.D., MPH
Kathleen Sullivan, M.D., Ph.D.
Medical Advisory Committee – Chair
Peter Wang
Darcy Gott
Youth Advisory Committee Representative
The Nurse Advisory Committee and Medical Advisory Committee ground the Foundation's work in clinical expertise and medical guidance—helping turn frontline experience and research into real progress for people living with immune deficiency.
This report is, in every sense, powered by you.
None of this year's progress would have been possible without you. To our donors, volunteers, advocates, sponsors, partners, and every member of this community who showed up in ways big and small—thank you.
With gratitude to our 2025 sponsors:
Accredo Specialty Pharmacy, a part of Evernorth Health Services
ADMA Biologics
Allergy and Asthma Texas Health
Amgen
Axiva Health Solutions
BioTek ReMEDys
Biotechnology Innovation Organization (BIO)
Boston's Children's Hospital
Capstone Vital Care
CarePartners Pharmacy
Chiesi USA, Inc.
Christus Children's Hospital
CSI Pharmacy
CSL Behring
CVS Health
Faegre Drinker
GC Biopharma USA
Genentech
Grifols
InfuCare RX
Invivyd
Kedrion Biopharma
Koru Medical Systems
Merck
North Park Subaru
Octapharma
Pfizer
Pharming Healthcare
PhRMA
Realo Specialty Care
Sands RX
Show Me State Vital Care
Soleo Health
Sobi
St. Louis Children's Hospital
Sumitomo Pharma America, Inc.
Takeda
X-4 Pharmaceuticals
This year's progress moved us closer to a community that's connected, engaged, and empowered. Help us keep going.
© 2026 Immune Deficiency Foundation, all rights reserved.
The Immune Deficiency Foundation is a 501(c)(3) organization (EIN: 52‑1214782).
7550 Teague Road, Suite 220, Hanover, Maryland 21076