James is both an aHUS patient and a caregiver. His daughter was diagnosed in 2014. Three years later, he began developing symptoms. Along with his wife and daughter, James has been active in the aHUS community by participating in conferences and speaking at numerous events as an advocate for patients and their families.
HUDSON VALLEY, NY
In 2012, Barb’s middle child, Matthew was diagnosed with severe aHUS. He was in the ICU unit for 28 days before being cleared to fly home to New York. This launched Barb’s journey as caregiver, advocate and lead “pusher” for Matt’s care and recovery. Barb was previously on the Board of the Atypical HUS Foundation.
LITTLE RIVER, SC
Sue brings comprehensive knowledge of patient services in hematology, nephrology and neurology clinical specialties within the rare and ultra-rare disease realm. Her disease specialties include PNH, aHUS, MG, FCS and hATTR. She is skilled in case management program development and initial drug launches.
Dr. Dixon is currently an Associate Professor of Pediatrics and Medicine at the University of Colorado School of Medicine and Children’s Hospital Colorado. His clinical interests focus on complement-mediated renal diseases, such as aHUS. Dr. Dixon is also an investigator in several clinical trials of complement-targeted therapies.
Cameron Shadinger is a singer and songwriter, but more importantly, a wife and mother to three children. Her daughter was diagnosed in 2014, followed by her husband in 2017. Since then, she has become an activist and traveled with her family to Washington, DC on multiple occasions to advocate for issues important to the rare disease community.
Art has worked with nonprofits for over 40 years. In June 2020, he retired as CEO at Patient Services, Inc. (PSI). PSI was founded more than 30 years ago as the pioneer patient assistance foundation providing premium, copayment, and ancillary help to over 40 different patient disease populations, enabling these patients to afford their treatments.
Jim is the founder of Care & Cure Partners and he has over 25 years of experience working with nonprofit organizations to advance their government relations and advocacy goals. Through most of his career, he has focused on issues involving health insurance coverage and access to treatments and therapies, including the charitable assistance model.
J.W. offers more than 25 years of experience working with nonprofits and associations across a wide range of industries, including health care. He is a Fellow of the Public Relations Society of America and ASAE Certified Association Executive. J.W. is happy to be a part of the effort to launch the aHUS Action Network and engage patients across the country.
aHUS Action Network is a nonprofit corporation registered in the Commonwealth of Virginia. aAN has applied for 501(c)3 status with the Internal Revenue Service and an official determination is currently pending.