Support for Those Living with Adrenal Insufficiency

Who We Are

Our Mission

At Adrenal Insufficiency United, we work to improve the lives of those affected by adrenal insufficiency through support, education, collaboration, and legislative action.

How and why we started

Before social media, we were virtually alone. While we struggled to understand this disease, we watched our loved ones suffer. Plagued by nightmares about what would happen if we weren’t there to give our loved ones the injection to save their lives, many of us felt anger, depression, hopelessness, and frustration. We could not accept that this was the best care possible. We knew there had to be something better. In our own ways we fought, but we fought alone.

Then along came the internet and social media. We started to find each other and see that we WE WERE NOT ALONE! We realized that we must unite as one voice to effectively create change. We banded together, a grassroots group of patients and loved ones, selling cupcakes, and knocking on government doors, and Adrenal Insufficiency United was born.

How we’ve grown

Since our beginning, AIU has grown from a small passionate group, into a large network of people working together. We provide patient support through our support groups and website information. We create educational materials for schools, physicians, and emergency teams, and we collaborate with other organizations to promote awareness and improve patient care.  Our work on protocols and legislation takes place on both state and national levels. (Read more about what we do here)

In July of 2016 AIU consolidated with the Adrenal Insufficiency Coalition (AIC). AIC is committed to improving communication between patients and physicians.  Our mutual goals and complimentary approaches combined to address a wide variety of issues faced by the AI community. Our new Research Library is just one of the additions AIC has brought to AIU.

Our supporting members, (that’s you), come from countries around the world. Emergency technicians, physicians, nurses, elected officials, journalists, and others in our communities are standing with us in our mission for change. Our numbers grow every day and we are no longer alone.

Vision for the future

Every person affected by adrenal insufficiency deserves a chance to reach their full potential. Our vision for the future includes clear information for physicians on diagnosis and testing, to avoid needless suffering. The development of an instant cortisol meter, so patients and caregivers can easily adjust treatment, and standard emergency protocols, so they can feel confident seeking help. We believe in this vision, and we hope you’ll join us to make it happen.

Our governing body is, and will always be, comprised of those affected by adrenal insufficiency. We pledge to never lose sight of why this group was started.

Executive Director

Jennifer Knapp is one of our founders. Her daughter has adrenal insufficiency.  Jennifer is a former business owner and special education teacher with a passion for helping others, and a commitment to creating positive change for those with AI.  Together with Kirsten Norgaard, she worked to pass AI protocols in Oregon. In addition to her role as AIU Executive Director, Jennifer also serves as the Oregon state Ambassador for the National Organization for Rare Disease, (NORD)

Board of Directors

Kirsten Norgaard is also a founder of AIU. She has a son with adrenal insufficiency.  She is tenacious and unrelenting in her fight to create protocols, not only for her son, but for all with adrenal insufficiency.  Kirsten was able to get protocols enacted in her county and at her local hospital providing a model for others who wish to do the same.

Paula Kirby Rivas is mother to a child with adrenal insufficiency. She has helped pass legislation to improve the care of those with adrenal insufficiency.

Maria Stewart has always had an adventurous spirit. Her background includes being one of the first female concrete truck drivers in Bellingham Washington, traveling in Mexico, Canada, and the US, and a few years living in Australia. When Maria moved to the Central Plains she started the first organic Community Supported Agriculture farm in the area. Her sixteen-year journey with adrenal insufficiency has developed a passion for helping patients receive proper care. She brings her skills for organizing and her love of community to the team and is excited to be a part of an organization working for change.

Gail McArthur is a Canadian with deep roots in the U.S., including descent from a Salem “witch”! She is a retired educator who worked in the public-school system near Vancouver, BC, as well as in teacher education and educational research. Retirement brought adventures with her late husband, daughter, and granddaughters. But soon after losing her husband and mother Gail developed a mysterious ailment – eventually diagnosed as SAI. Searching the internet for support and information, Gail soon met Maria Stewart and the other principals of AIC/AIU online and began her new career in advocacy.

Monica Unseld has secondary adrenal insufficiency, likely from exposure to asthma medications as a child. She also has years of experience in the nonprofit world. She has degrees in both biology and public health. She passionate about helping others and hopes to get a state protocol for the state of KY.

Randy Fishburn is a Colorado native. He began his adult life as a paramedic. He now has over twenty years experience in the information technology field and works as a virtualization engineer. Randy has Addison’s disease and pan-hypopituitarism, (probably from birth) He’s passionate about helping others with AI and rare diseases. His experience in emergency medicine and I.T. led him to modify an insulin pump for cortisol delivery when tablet therapy didn’t work. His innovative attitude and previous experience working with non-profits makes him a welcome addition to the team.
Blake Heflin was diagnosed with classical non-salt wasting CAH at age 4. He graduated from Christopher Newport University with an Honors: B.S in Cellular, Molecular, and Physiological Biology and is currently attending George Mason for a Master’s in Health Administration and Health Systems Management. Blake is a Manager for Scribe America in the greater DC area, and has a passion for good medicine, great people, and his two leopard geckos: Stumpy and Mason.

Shannon Taylor received her Bachelor of Arts from Christopher Newport University, where she majored in Communication Studies and minored in French. In August 2018, she will begin a Master of Arts in Communication program at George Mason University, focusing her discipline in Health Communication. She has worked as a research assistant in family and intercultural communication, and aspires to have a career in healthcare (specifically in patient advocacy, family health education, or public health) upon graduating from GMU. Shannon is the partner of someone with AI.

 

The Stewardship Council elects board members and helps keep AIU’s mission the priority.

Stephanie Ash, Tracy Boetel, Sandy Alprin, Jill Lester Crowley, Jennifer Knapp

All our Volunteers, we can’t do it without you!

AIU welcomes volunteers and provides all the resources and help you need to help make a difference in your communities. Contact jennifer.k@aiunited.org to find out about volunteer opportunities.

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

Recent News and Events

  • AIU News and Upcoming Events
    AIU News and Upcoming Events
    May 30, 2018 by
    AIU News We’re excited to announce two additions to our Board of Directors. Randy Fishburn and Blake Heflin joined our team in April. Each has their own unique perspective on living with AI, and how that can translate into helping others facing the same challenges. We already...
    Read more
  • What Constitutes an Emergency
    What Constitutes an Emergency
    May 29, 2018 by
    by Sarah Reilley   Read more from her blog @ Spoons and Adrenals As we all know, adrenal crisis is a life or death situation.  Without immediate, proper care, there’s a very small window to correct the crisis before coma, brain damage, and death occur.  Not every emergency...
    Read more
"150" post_thumb_height="150"]

Contact Us


PO Box 72407
Springfield, OR 97475
Tax ID: #45-4624912
contact@aiunited.org
Facebook
Instagram
LinkedIn
Pinterest
Twitter
YouTube
Patreon

Medical Professionals

Doctors and other medical professionals email us for more information.



Join our Email List

We respect your privacy and will never share your information.