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About us
Felicia Morton, Rare Disease Advocate, Founder, and Executive Director of the CGD Association of America
Background
The CGD Association of America (CGDAA) was founded in 2019 to advocate for patients and X-linked female CGD carriers with Chronic Granulomatous Disease (CGD). We have the largest community of patients and X-linked female carriers with CGD in the world. Currently, our database has 550 patient contacts and more than 200 CGD physician specialists/influencers worldwide.
About Felicia Morton, Founder and Executive Director
Felicia has been a well-known advocate for the CGDcommunity for more than a decade. As a female carrier of X-linked CGD, the daughter of an affected female carrier, and the mother of a son who was diagnosed with CGD and underwent a successful stem cell transplant for CGD in 2016 - she hasexperienced the impact of this rare, inherited primary immune deficiency first-hand.
In 2019, seeing the need for a more focused voice for the CGD community, Felicia formed the CGDAA, a Sec.501c3 non-profit organization with the mission to advocate for the CGD community by providing clear, accurate, and independent news and information about CGD and advancing CGD research.
Thanks to the CGDAA’s reputation as a trusted resource, the organization’s database has become the largest in the world; this robust collection of patient and carrier data has enabled important IRB-approved, patient-centered surveys and studies. In addition to funding important research, our organization also publishes a monthly e-newsletter for the community and holds well-attended online events to help connect our rare community and provide education.
Given the rarity of CGD, the disease can feel isolating. The CGDAA is committed to helping patients and carriers know they’re not alone.
Ongoing projects:
• The CGDAA has provided a research grant to the Primary Immune Deficiency Consortium to investigate long-term post-transplant outcomes for patients with CGD.
Positions/Honors
• Felicia Morton has been appointed as a PatientAdvocacy Group liaison for the Primary Immune Deficiency Treatment Consortium, representing 47 centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system.• Felicia Morton has been appointed as a PatientAdvocacy Group liaison Rare Diseases Clinical Research Network, an NIH-funded research network of 20 active consortia focused on rare disorders.• Felicia Morton has been nominated in 2020 and 2021 as Global Genes “Rare Champion of Hope” for outstanding accomplishments in advocating for patients with rare disease.
CGDAA Administration & Advisory Board
Executive Board
Medical Advisory Board
Patient Advisory Board
Felicia B. Morton
Denise Proffitt
Barbara D. Morton
Patient Advisory Board
Medical Advisory Board
Patient Advisory Board
Robert Karp, patient with CGD
Scott Vogel, former CGD patient after successful transplant
Carla Dean, autosomal patient with CGD
Female Carriers of X-Linked CGD
Advisory Board
Maren Chamorro
Gina Continenza
Kiron Dhalilwal
Alia Naffouj
Marianne Rørholt (Norway)
Medical Advisory Board
Medical Advisory Board
Medical Advisory Board
Harry Malech, MD, National Institutes of Health
Chief, Genetic Immunotherapy Section
Deputy Chief, Laboratory of Clinical Immunology and Microbiology
National Institute of Allergy and Infectious Diseases, National Institutes of Health
Kathleen Sullivan, MD, PhD, Chief of the Division of Allergy and Immunology, Children's Hospital of Philadelp
Harry Malech, MD, National Institutes of Health
Chief, Genetic Immunotherapy Section
Deputy Chief, Laboratory of Clinical Immunology and Microbiology
National Institute of Allergy and Infectious Diseases, National Institutes of Health
Kathleen Sullivan, MD, PhD, Chief of the Division of Allergy and Immunology, Children's Hospital of Philadelphia
Jennifer Leiding, MD, Adjunct Associate Professor John's Hopkins University and Attending Physician, Orlando Health Arnold Palmer Hospital for Children
Peter Newburger, MD, Attending Physician, Dana-Farber/Boston Children's Cancer and Blood Disorders Center
Rebecca Marsh, MD, Clinical Director, Primary Immune Deficiency Program and Co-Director, Diagnostic Immunology Laboratories, Cincinnati Children's Hospital
Mary Dinauer, MD, PhD
Fred M. Saigh Distinguished Chair of Pediatric Research
Professor of Pediatrics , Washington University School of Medicine
St. Louis Children’s Hospital