CGD community comes together for IDF’s first CGD Symposium

When looking back at the Immune Deficiency Foundation’s first CGD Symposium, held on June 25- 26 during the IDF 2015 National Conference in New Orleans, one word immediately comes to mind: WOW!

Although Chronic Granulomatous Disease (CGD) is a rare condition, affecting only about 1,200 people in the U.S., our CGD community is bigger, stronger, and more active than ever!

In fact, the number of attendees with CGD quadrupled since our last National Conference in Baltimore in 2013. This year, 78 patients and family members attended—compared to 17 in 2013. Indeed, it is an exciting time to be part of the CGD community!

Thanks to generous scholarships from Horizon Pharma, patients and family members from across the U.S. and Canada were able to attend this groundbreaking event and learn the latest news and information on CGD from the world’s foremost specialists in the field, including:

• Steven Holland, MD, National Human Genome Research Institute, NIH, spoke about current best practices in CGD treatment, as well as advancements in gene therapy.
• Sergio Rosenzweig, MD, PhD, National Human Genome Research Institute, NIH, provided an in-depth look into how CGD affects the immune system.
• Theo Heller, MD, National Human Genome Research Institute, NIH, discussed GI involvement in CGD, and what patients need to look out for.
• Andrew Gennery, MD, a senior lecturer in Pediatric Immunology and Stem Cell Transplantation at Newcastle University, discussed the enormous advancements in stem cell transplantation techniques, thanks to refined HLA-tissue typing, the increased use of alternative donors, as well as the availability of new stem cell sources including umbilical cord blood as well as less toxic chemotherapeutic conditioning.
• Joie Davis, PNP-BC, APNG, National Institute of Allergy and Infectious Diseases, NIH, presented a fascinating overview of how patients inherit CGD.
• Victoria Anderson, MSN, CRNP, Capt (ret.) USPHS, National Institute of Allergy and Infectious Diseases, gave an upbeat talk on how patients can live successfully with CGD, thanks to daily prophylaxis.
• Maryland Pao, MD, National Institute of Mental Health (NIMH), discussed how CGD can affect the psychological well-being patients and caregivers and provided ways to cope.

Many attendees said they felt more positive about the future after hearing the distinguished speakers at the Symposium, and news regarding advances in stem cell transplants and gene therapy was especially encouraging.

“Listening to the experts in the fields gave us such hope that a cure is just around the corner,” said Dottie Higgins, whose son, Nick, age 21, has CGD.

In addition, thanks to the record turnout at the symposium, the networking sessions were lively affairs, where patients and caregivers shared experiences and made many new, and meaningful connections.

“With this disorder, as rare as it is, it was such a wonderful opportunity to meet and converse and share stories and hear other parenting concerns that are similar to ours,” said Higgins.

Just being in a room filled with others who know exactly what you’re going through, can be “live-changing,” said Jeannie Minney Brown, whose son, Thaddeaeus, age seven, has CGD. “We felt extremely blessed and humbled to be able to be a part of it,” she said.

Mary Hurley, president of The CGD Association and Board of Trustees member of the IDF, agrees.

“It’s such a joy to be together and learning so much about CGD,” said Hurley, whose son Stephen, 34, has CGD. “We are like a big CGD family, with everyone giving hugs when we meet.”

The CGD Symposium at the IDF 2015 National Conference was made possible by an unrestricted educational grant from Horizon Pharma.