About Us
ERDC is all about improving access to quality care and treatments. We do this through our education, Rare Candor podcast and by developing and distributing our flagship tool, the Hospital Emergency Advocacy & Treatment Kit (HEAT Kit). The kit is available free to anyone impacted by one of the rare diseases we serve. Our tools help patients and loved ones gain confidence and agency as they seek to access care.
We take our values and guiding principles seriously. Every action we take, every tool we create is checked against our values and guiding principles to ensure we are staying true to our purpose – making life easier for people with rare diseases.
- We tell the truth about what it is like to live with a complex chronic disease.
- We tell the truth about what it is like to love someone with a complex chronic disease.
- We listen. Deeply.
- We freely share what we have with other organizations and policy makers.
- We keep things practical and simple.
We strongly believe in partnering. We do not duplicate what already exists. We partner with organizations to make the HEAT Kit™ available to their community free of charge. We also direct people who receive HEAT Kits to organizations providing support & education. In effort to keep costs down we utilize a scalable, replicable process in developing kits to ensure we can provide the maximum number of free HEAT Kits.
Healthcare. There’s something in that word that brings up a visceral and usually unpleasant sensation in the pit of our stomachs. And. It’s obviously essential for the survival of people with rare and chronic diseases.
Years ago my wife started an organization to help people with Parkinson’s Disease and their care systems. She was passionate to craft an organization that really served the practical, every day needs of people with PD and their care partners. Now it’s her turn to be on the receiving end of much needed care and systemic change.
Sarah was diagnosed with Eosinophilic Granulomatosis with Polyangiitis (EGPA) – a rare form of Vasculitis. It took over a year for her to get the correct diagnosis. Anyone with a rare disease knows the heartbreaking and maddening pattern of being told different diagnoses over and over. Not to mention the patronizing platitudes that emanate from the overworked masses employed in the healthcare system. And then there is the never ending attempts to corral the disease.
If you’re reading this – you KNOW how it is.
ERDC is here to tell the truth. The truth about what it’s like to live with a rare, chronic illness and what it’s like to live and love someone with debilitating illnesses. And we’re here to listen and to try and help the best we can.
Carol Jones
Carol Jones is a licensed registered nurse with 40+ years of experience in asthma education and clinical practice. She has been a physician service representative for Allergy Guardian, served as a consultant to the American Academy of Pediatrics on various asthma devices and guidelines and has been involved in asthma related research for more than 20 years. She has served on industry advisory boards and as medical editor for the Allergy and Asthma Network. In her retirement she is serving as a Faith Community Nurse in a large episcopal parish in Tucson, Arizona.
Donna Behler McArthur
Donna brings over 50 years’ experience in nursing, including 40 years as a Family Nurse Practitioner (FNP), NP educator, and administrator within ambulatory health care settings in the United States and Saudi Arabia. I began my career trajectory within the USAF to include being a flight nurse. She has a Masters of Science in Nursing (FNP) from Vanderbilt School of Nursing and a Ph.D. in Nursing from the University of Maryland School of Nursing. Currently “retired”, she holds adjunct clinical professor positions at Vanderbilt University School of Nursing, the University of Arizona College of Nursing and Department of Neurology. In recent years, her activities have focused on the healthcare of adults living with ALS and serving as a parish nurse.
Pam Squires
Pam Squires holds a Master’s Degree in Social Work, a BA in Education and also has been a Registered Radiation Therapist. Her 25+ years Social Work experience spans a variety of settings including home-based, hospital and other facility-based services. With her personal and professional understanding of the challenges of navigating complex health issues, she is able to identify programs and resources that address underlying pain points and system breakdowns. She brings a passion for navigating care within an interdisciplinary team to ensure care plans and interventions are carried out with the whole patient and support system in mind.
Roni Byrne
Roni Byrne, JD Associate City Prosecutor in Tucson, AZ shares her understanding of the law and passion about protecting and serving others to the work of ERDC. Originally from Israel, receiving her legal degree in the UK and fluent in Hebrew – Roni brings a diverse perspective to her role. She is engaged with multiple underserved communities and blends her personal and professional experience to sharpen and strengthen ERDC’s strategic focus. Roni is the go-to for friends looking for someone to help make decisions and be present in a medical emergency. Her personal experience with a chronic disease enables just the right balance of grit, stamina, care and commitment.
Sarah Jones
Sarah Jones has more than 25 years of experience leading non-profits and health care programs, Sarah has designed programs and led trainings for local, national and international audiences. Sarah is passionate about securing funding that meets the needs of all stakeholders. She holds two Masters degrees: Masters of Science in Strategic Design Management from Parsons the New School and a Masters in Public Administration (healthcare). Her life has irrevocably changed since being diagnosed with the rare disease, EGPA, Eosinophilic Granulomatosis with Polyangitiis. She brings her passion for change to this world of rare diseases.
John Stadler
John Stadler, MA has over 45 years in business experience and was recently the owner of a software development company. He traveled the world as a consultant in: USA, East Asia and Europe until his diagnosis of Microscopic Polyangiitis Vasculitis (MPA) Vasculitis. John holds a Master’s in leadership from Augsburg University of Minneapolis and an undergraduate degree in marketing. In 2019, he started online Vasculitis supports group that spanned the US, eleven countries, 7 continents. John participated in over 5,000 hours of patient support calls. He has a deep and unyielding passion for helping people coupled with what he leaned about how challenging, uncertain, and difficult it is to navigate insurance, providers, and the medical field for people with rare diseases.
Carol Jones
Carol Jones is a licensed registered nurse with 40+ years of experience in asthma education and clinical practice. She has been a physician service representative for Allergy Guardian, served as a consultant to the American Academy of Pediatrics on various asthma devices and guidelines and has been involved in asthma related research for more than 20 years. She has served on industry advisory boards and as medical editor for the Allergy and Asthma Network. In her retirement she is serving as a Faith Community Nurse in a large episcopal parish in Tucson, Arizona.
Donna Behler McArthur
Donna brings over 50 years’ experience in nursing, including 40 years as a Family Nurse Practitioner (FNP), NP educator, and administrator within ambulatory health care settings in the United States and Saudi Arabia. I began my career trajectory within the USAF to include being a flight nurse. She has a Masters of Science in Nursing (FNP) from Vanderbilt School of Nursing and a Ph.D. in Nursing from the University of Maryland School of Nursing. Currently “retired”, she holds adjunct clinical professor positions at Vanderbilt University School of Nursing, the University of Arizona College of Nursing and Department of Neurology. In recent years, her activities have focused on the healthcare of adults living with ALS and serving as a parish nurse.
John Doe
Managing Director
Pam Squires holds a Master’s Degree in Social Work, a BA in Education and also has been a Registered Radiation Therapist. Her 25+ years Social Work experience spans a variety of settings including home-based, hospital and other facility-based services. With her personal and professional understanding of the challenges of navigating complex health issues, she is able to identify programs and resources that address underlying pain points and system breakdowns. She brings a passion for navigating care within an interdisciplinary team to ensure care plans and interventions are carried out with the whole patient and support system in mind.
Roni Byrne
Roni Byrne, JD Associate City Prosecutor in Tucson, AZ shares her understanding of the law and passion about protecting and serving others to the work of ERDC. Originally from Israel, receiving her legal degree in the UK and fluent in Hebrew – Roni brings a diverse perspective to her role. She is engaged with multiple underserved communities and blends her personal and professional experience to sharpen and strengthen ERDC’s strategic focus. Roni is the go-to for friends looking for someone to help make decisions and be present in a medical emergency. Her personal experience with a chronic disease enables just the right balance of grit, stamina, care and commitment.
Sarah Jones
Sarah Jones has more than 25 years of experience leading non-profits and health care programs, Sarah has designed programs and led trainings for local, national and international audiences. Sarah is passionate about securing funding that meets the needs of all stakeholders. She holds two Masters degrees: Masters of Science in Strategic Design Management from Parsons the New School and a Masters in Public Administration (healthcare). Her life has irrevocably changed since being diagnosed with the rare disease, EGPA, Eosinophilic Granulomatosis with Polyangitiis. She brings her passion for change to this world of rare diseases.
John Stadler
John Stadler, MA has over 45 years in business experience and was recently the owner of a software development company. He traveled the world as a consultant in: USA, East Asia and Europe until his diagnosis of Microscopic Polyangiitis Vasculitis (MPA) Vasculitis. John holds a Master’s in leadership from Augsburg University of Minneapolis and an undergraduate degree in marketing. In 2019, he started online Vasculitis supports group that spanned the US, eleven countries, 7 continents. John participated in over 5,000 hours of patient support calls. He has a deep and unyielding passion for helping people coupled with what he leaned about how challenging, uncertain, and difficult it is to navigate insurance, providers, and the medical field for people with rare diseases.
