The Hyper IgM Foundation Blog 

NEW YORK, New York — The Hyper IgM Foundation is proud to announce the awarding of a $75,000 research grant to Dr. Bruce Sullenger at Duke University, in collaboration with Dr. Suk See De Ravin at the National Institutes of Health. This seed funding will support the expansion of pioneering gene-editing research aimed at developing in vivo gene-editing approaches for the treatment of Hyper IgM Syndrome and related immune disorders.

This grant builds upon foundational work in gene editing for Hyper IgM Syndrome and represents a critical next step toward therapies that could one day correct genetic immune deficiencies directly within the body, without the need for ex vivo cell manipulation or stem cell transplantation.

Hyper IgM Foundation President Akiva Zablocki, MPH, stated:

“This grant reflects the Foundation’s role as a catalyst for early-stage, high-impact science. By providing seed funding for in vivo gene-editing research, we are helping to lay the groundwork for therapies that could fundamentally change how Hyper IgM and other immune disorders are treated in the future. This is exactly the kind of work that often goes unfunded in its earliest stages — yet it is essential for long-term breakthroughs.”

The awarded funds will support collaborative research efforts to expand and adapt existing gene-editing strategies toward in vivo delivery methods, an approach that could significantly broaden access to gene-based therapies for patients with immunodeficiencies. While still early in development, in vivo gene editing holds the potential to overcome many limitations associated with current treatment options, including the risks and eligibility constraints of stem cell transplantation.

For patients with X-Linked Hyper IgM Syndrome (X-HIGM), treatment options remain limited. Allogeneic stem cell transplant is currently the only curative therapy, but it is not feasible for many patients due to age, lack of suitable donors, or pre-existing infections and complications. Most individuals rely on lifelong immunoglobulin replacement therapy and prophylactic antibiotics, which manage symptoms but do not address the underlying genetic cause of the disease.

The Hyper IgM Foundation’s investment in this Duke–NIH collaboration represents strategic seed funding — supporting research at a stage where proof-of-concept work can unlock future support from major institutions, government agencies, and industry partners. The long-term goal is to help move promising gene-editing concepts from the laboratory toward scalable, clinically viable therapies for immune disorders.

The Hyper IgM Foundation’s mission is to improve the treatment, quality of life, and long-term outlook for children and adults living with Hyper IgM Syndrome. In addition to funding research, the Foundation connects families affected by Hyper IgM with education, advocacy, and peer support. Since its founding, the Hyper IgM Foundation has awarded over $300,000 in research grants to advance the understanding and treatment of this rare immunodeficiency.

For more information about Hyper IgM Syndrome or to support the Foundation’s work, please visit www.hyperigm.org/donate.

For media inquiries or questions about this grant, please contact info@hyperigm.org.