July 2026

July 2026, SCIDFoundation.org

A Grandmother’s gift – Most months, this newsletter spotlights the journey of a child with SCID or their parents. But grandparents experience the heartache of a rare diagnosis, too. They often stand quietly in the background, offering love, encouragement, and support while watching their children make some of the most difficult decisions of their lives. This month, we’re shining the spotlight on one remarkable grandmother whose love for her grandson inspired her to do something extraordinary. You won’t want to miss her story.

ADA-SCID patients on enzyme replacement therapy –  We’re looking to connect with you. 

Research Grant to improve clinical outcomes and quality of life for those affected by SCID  – The SCID Foundation is proud to announce the launch of our first Research Grant Program, marking an important step in our commitment to improving the lives of people affected by Severe Combined Immune Deficiency (SCID).  By investing in innovative research today, we hope to help improve outcomes for the patients and families of tomorrow.

Meet Julie and Benny

By: Julie, Grandmother to Benny, XSCID

September 8, 2025, was a joyous day for our family. Our son Tim and his wife, Trisha, welcomed their second son, Benjamin Matthew. Benny joined his two-year-old brother, Miles, and we were filled with excitement for the future.

Coincidentally, that same day I submitted my application to run the 130th Boston Marathon, to be held in April 2026. I had qualified to apply the previous fall and was looking forward to running my fourth Boston Marathon.

Just a few days later, however, our world was turned upside down. We were shocked to learn that Benny’s newborn screening indicated he most likely had Severe Combined Immunodeficiency (SCID). Thankfully, Tim and Trisha live just a few hours from Children’s Hospital of Philadelphia (CHOP). Benny was quickly admitted, and further testing confirmed a diagnosis of X-linked IL2RG SCID.

His treatment plan required three months of strict isolation while awaiting a stem cell transplant. Fortunately, our family has a cabin in western New York where Trisha and Benny were able to isolate, while Tim and Miles remained at home, trying to maintain as much normalcy as possible.

The search for a donor began, and we were blessed to find a near-perfect match through the national registry.

In November, a minor setback developed when Benny began experiencing graft-versus-host like complications due to maternal engraftment, requiring more frequent visits to CHOP. The logistics made staying in western New York difficult, but once again Tim and Trisha were surrounded by extraordinary kindness. Neighbors generously offered the use of their beach house just an hour from Philadelphia, allowing Trisha and Benny to remain closer to the hospital for the remainder of his isolation.

Those three months of separation were incredibly difficult. Yet through the unwavering support of family, friends, neighbors, and countless others, admission day finally arrived in early December. Benny received his stem cell transplant on December 12, 2025. His recovery exceeded everyone’s expectations. Just one week later, his blood tests showed the presence of white blood cells, an early sign that the transplant was working. On December 31, 2025, Benny was discharged to the Ronald McDonald House, where he remained close to CHOP for continued monitoring.

Throughout those uncertain months, running the Boston Marathon was the last thing on my mind. But with the hope that came with the new year, I slowly returned to training as Benny continued to grow stronger.

As I logged mile after mile, I found myself thinking about dedicating my marathon to Benny. Whenever I didn’t feel like running or was struggling through a difficult workout, I thought about what Benny had endured—and what Trisha, Tim, and Miles had endured alongside him. Their courage inspired me. If they could face those challenges with such strength, surely, I could finish a marathon.

I just wasn’t sure how to turn that inspiration into something more.

Then, in February, the Boston Athletic Association’s monthly newsletter featured the “Qualified Runners for a Cause” fundraising opportunity. Former Boston Marathon champion Des Linden captained the team, giving qualified runners the opportunity to raise money for a charity of their choice. I had always known that Boston’s charity runners raised millions of dollars each year, but I hadn’t realized that qualified runners could also participate in fundraising.

The moment I read about the program, I knew exactly what I wanted to do.

I joined the team and chose to raise money for the SCID Foundation.

As my training continued, so did Benny’s remarkable progress. His blood counts steadily improved, and on February 27, 2026, he was finally able to come home.

In many ways, we grew stronger together.

Before we knew it, marathon day had arrived.

On April 20, 2026, I put on my “Brave” shirt in honor of Benny and began my 26.2-mile journey from Hopkinton to Boston. Every step I took that day was dedicated to the courage shown not only by Benny, but also by Trisha, Tim, and Miles.

The response was overwhelming. Through the generosity of family, friends, and even strangers, we raised $6,350 for the SCID Foundation. Being able to give back, even in a small way, allowed us to support the work they do to raise awareness and provide critical resources to families affected by SCID.

It was one of the most difficult seasons our family has ever experienced, but it also reminded us how fortunate we have been.

We were fortunate that newborn screening made an early diagnosis possible. We were fortunate to have an extraordinary medical team at CHOP. We were fortunate to be surrounded by family, friends, neighbors, and generous strangers whose support made an impossible journey manageable. And we were fortunate that decades of research have transformed SCID from what was once almost always fatal into a disease with real hope for a cure.

Today, I am thrilled to report that Benny’s blood counts are mostly within the normal range, and he appears to be well on his way to living a healthy, normal life.

By sharing our story, we hope other families facing the frightening diagnosis of SCID will know that there is hope. There is help. There are people who care. And even in the darkest moments, there is every reason to believe that brighter days are ahead.

If you or your child has ADA-SCID, is receiving enzyme replacement therapy, and lives in the United States, please make sure the SCID Foundation has your current contact information.

Some educational opportunities, including webinars and patient support programs, are specific to you and your needs. To ensure you receive invitations and other important ADA-SCID updates, we need to be able to contact you directly.

If you’re not sure we have your current email address or phone number, please reach out and let us know the best way to contact you. Email: Barb.Ballard@SCIDFoundation.org. 

The SCID Foundation is pleased to announce a new Request for Proposals (RFP) for one one-time research grant of up to $25,000. The purpose of this grant is to support research that advances the diagnosis, treatment, management, or long-term outcomes of individuals affected by Severe Combined Immune Deficiency (SCID).

Proposed projects must address one or more of the following areas of interest:

• Early diagnosis
• Definitive treatment
• Long-term follow-up
• Reducing complications
• Improving care management for patients on long-term enzyme replacement therapy
• Improving access to care
• Optimizing management of patients prior to definitive therapy
• Reducing CMV-related mortality and morbidity while preserving the benefits of breastfeeding in untransplanted or newly transplanted SCID patients
• Other novel approaches for improving diagnosis, treatment, and outcomes

The SCID Foundation welcomes innovative research that has the potential to improve clinical outcomes and quality of life for individuals and families affected by SCID.

For complete application details and guidelines, along with an online application, please visit SCIDFoundation.org/grant.

This month’s stories remind us that every member of the SCID community has the power to make a difference. Whether it’s a grandmother going the extra mile for her grandson, families staying connected through chatSCID, or researchers working toward better treatments, each effort moves us forward.

Your support makes that progress possible. Every donation to the SCID Foundation helps us provide education and peer support for families while expanding opportunities to fund research that can improve clinical outcomes and quality of life for everyone affected by SCID.

Together, we’re building more than a community. We’re creating hope, advancing research, and investing in a brighter future for every SCID family.

Know someone in the SCID Community who could use our news?
Encourage them to Sign up!